The Name Game

I’m still deep in the throes of preparing for a move. As I look at space allocation options for the suite that my son and I are planning to build in his garage, it’s becoming increasingly clear that even the few furniture pieces I had planned to take are going to be too big and I’m going to have to make some new purchases. For people with chemical sensitivities, any purchase can be problematic, and requires much research. As I shop for possibilities online, I’m reminded of the games that manufacturers and marketers play and the confusion that exists among the general public regarding materials used in furniture and housing. It’s not easy to figure out what we’re actually getting.

Here are a few confusing terms related to the home environment:

·        Solid wood – Technically, something made of solid wood is made of basic lumber. Much of the wood furniture sold today, however, is made of a manufactured wood product, such as particleboard, medium density fiberberboard (MDF), high density fiberboard (HDF) or oriented strand board (OSB). Chipboard, flakeboard, furniture board, composite wood, and engineered wood are other possible terms. Manufacturers may refer to them as “solid wood products” or as of being made of “wood solids.”  Sometimes private sellers advertising products on sites like eBay or Craigslist will say that a piece of furniture made from particleboard is solid wood. This may be due to confusion as to material type, but sometimes I think they just mean that the piece doesn’t contain metal or upholstery.

Manufactured wood products combine small wood particles with an adhesive resin. Plywood uses layers of wood rather than particles, but otherwise the principle is the same. When used in furniture, manufactured wood is generally covered with a laminate or veneer, making the identification process more challenging. The toxicity of manufactured wood can be high, and comes from the adhesives, which often contain large amounts of formaldehyde and other problematic chemicals.

·        Bonded leather – Bonded leather is the fabric equivalent of manufactured wood. Wikipedia expains that “bonded leather is made by shredding leather scraps and leather fiber, then mixing it with bonding materials. The mixture is next extruded onto a fiber cloth, or paper backing, and the surface is usually embossed with a leather-like texture or grain.”  The amount of natural leather in bonded leather products can vary significantly and can sometimes be quite low. The primary bonding material is generally polyurethane, and among the other chemicals commonly found in bonded leather are plasticizers, which have been associated with a range of health problems.

Terms for leather-like synthetic fabrics (which are generally some form of vinyl) include leatherette, pleather, and naugahyde. “Vegan leather” is an especially interesting term. It can refer to any non-animal leather-like product. Generally it refers to vinyl, but can occasionally refer to alternative leathers made from cork or kelp.

·        Linoleum – True linoleum is a product made from linseed oil and natural materials such as powdered cork, tree resin, and limestone. It was once used widely as a flooring material, but has now been largely replaced by vinyl. Generally, manufacturers and marketers don’t use the term incorrectly, but private sellers, realtors, and landlords may refer to linoleum flooring when the flooring is actually a vinyl product.

·        Hardwood or ceramic floors – Another flooring issue that people searching for healthy housing often encounter is that homes or apartments advertised as having hardwood or ceramic tile floors may actually be floored with a laminate. Laminates have a manufactured wood core with a photographic layer bonded to it that simulates wood or ceramic. Generally the term “floating floor” refers to laminate flooring.

Shopping with health in mind means learning to be a code-breaker. It’s not easy, but it’s important. Once I’ve cracked this code, I’ll move on to another: trying to decipher the color designations. Is elm bark, for example, more brown or gray?  This all makes my head spin.

Who Am I?

The news has been filled in recent days with stories of people identifying with a gender or race other than the one that seemed apparent when they were born. Because of that, I’ve been pondering the issue of identity. How much is chosen for us?  How much can we choose for ourselves? Who am I, really?

People define themselves using many criteria. Age, race, and gender are starting points as are marital status and parenthood. We define ourselves by our jobs, our politics, and our faith. For those of us with chronic illnesses, a significant temptation is to let our physical conditions label and define us.

So who am I? 

* I am more. I am more than my circumstances. I am more than my diseases. I am more than what the world sees.

Remembering that I’m more than my physical challenges is one of my biggest struggles. My chemical sensitivities, in particular, seemingly invade every corner of my life and affect every decision I make. I can never escape them.

I have long been intrigued by Satan’s reasoning in the book of Job. He asked God for permission to test Job in all sorts of horrible ways, including the death of all ten of his children. The Bible tells us that Job felt great sorrow and grief when confronted with his losses, but that he didn’t accuse God of wrongdoing. So Satan tried again. He proposed to God, “Reach out and take away his health, and he will surely curse you to your face!" (Job 2:5, NLT) 

In general, I don’t think it’s helpful to compare suffering. I can’t even imagine the pain Job and his wife must have felt at losing all of their children, and I’m not at all sure that I would have passed Job’s test. I do know the grief, however, of losing my mother when I was a young teenager, and losing my husband last year. They were significant and life-altering losses. It wouldn’t be accurate to say that losing my health was harder than losing my loved ones, but it’s fair to say that it’s a loss with a different flavor. No matter how close the relationship between any two people, there is still a measure of separateness. While living on this earth, however, it is impossible to separate from the physical body. My body feels like me. My illnesses feel like my identity.

It feels that way, but it isn’t the truth. I have beliefs, thoughts, experiences and interests beyond my physical condition and my circumstances. I am more. You are more. Let’s remind ourselves of that.

* I am less. 1 Corinthians 12 describes Christians as parts of a body. Verses 19-21 say “How strange a body would be if it had only one part! Yes, there are many parts, but only one body.  The eye can never say to the hand, 'I don't need you.'"

I am less than I can be when I’m not attached to the rest of the body of Christ. Finding a way to attach is a great challenge for anyone with significant chemical sensitivities. Many of us have learned, however, how essential it is to keep trying and how difficult it is to live a full spiritual life alone. Church, you are also less than you are created to be when you don’t find a way to include everyone who wants to be included. God designed us to complement each other and to work together to represent him on this earth.

* I am complete. After my husband died, I began to think about fractions. Our family suddenly seemed incomplete. We seemed like 3/4ths of a family. I realized that I needed to reframe the issue in my mind and stop thinking of my sons and myself as three of four, but as three of three. I needed to change both the numerator and denominator.

I also realized that not only was I seeing my family as incomplete or somehow not enough, but I was also seeing myself that way. Perhaps I was taking on the values of my culture. In the country and time in which I currently live, my race and education work in my favor, but my age, gender, marital and health status work against me.

Fortunately, God doesn’t see me as the world does. Colossians 2:10 tells me that I am complete through my union with Christ. He wants me to continue to grow and develop (the same chapter talks about letting my roots grow down into him), but as I am, I’m enough to be fully loved and accepted.

The Bible tells me that I’m justified through Christ. I’ve heard the term “justified” defined as “just as if I never sinned.”  It’s a helpful definition, but I also find it helpful to think about how, when typing, our computers let us “justify” our margins. When we do that, all the gaps are filled in. Every line reaches the edge. God does that for me. He fills in the gaps.

So who am I?  Who are you?  What defines us?  Who defines us?

They aren’t easy questions for anyone, and maybe they’re harder than usual for people with chronic illness. It’s so easy to let ourselves be defined by our diseases, circumstances, or culture. Instead, I want to let God tell me who I am. What he tells me is that I am his deeply loved child. That’s who I am, and that’s enough. 

I’m Not “Allergic to Smells”

I’ve written before about the fact that people tend to associate toxicity with the presence of a discernible odor. I’m revisiting the issue because I continue to hear chemical illness described as being “allergic to smells.”  I understand why people make that assumption, but the description isn’t fully accurate. One part of the inaccuracy is that although allergies can accompany it, chemical illness doesn't usually involve the specific immune reactions seen in traditional allergies.  It is instead generally a problem of the body’s detoxification system being overwhelmed or malfunctioning. The second inaccuracy is that not everything with a discernible odor is problematic and many odorless things are.

I’m also revisiting this issue because two recent sad stories drive home the point that toxic fumes don’t always come with an olfactory warning. A few weeks ago the story hit the news of a family of four on a trip to the U.S. Virgin Islands. The family was staying in a villa and the unit underneath the one they were renting was sprayed with the pesticide methyl bromide. At the time the story was reported, two weeks after the exposure, the two children were both in a coma and their father was unable to move or talk. The next day I read the account of a father and seven children who died from carbon monoxide poisoning after running a generator inside their home. Like methyl bromide, carbon monoxide is both odorless and potentially lethal.

The fact that our noses can’t always warn us of chemical dangers and that exposure symptoms are not always immediate makes it hard for people with toxic illness to know when an environment is potentially problematic. Online friend and fellow blogger Deb (visit her blog at www.greenleafindrought.blogspot.com) experienced that issue this week.

Deb moved to a new state about a year ago and has been very blessed to find a church that removed air fresheners and changed their cleaning products so that she could attend. She’s even been able to attend a care group, in the home of a family who lives a generally toxin-free life.

The family has a teenage son, and this past week, the son and a friend were getting ready for prom. The friend used cologne in a powder room near the area where the care group normally meets. The homeowner noticed the odor in the room two hours before the group was to meet and took action, wiping down all surfaces with vinegar, turning on exhaust fans, and opening windows. To be extra safe, the group decided to meet in a room farther from the location where the cologne was used, and Deb was seated between the open back door and an open window.

Deb reports that she didn’t smell anything during her time in the home. However, she states, “Less than half hour after getting home every bone and muscle and fiber in my body hurt . . . . I also had dizziness, migraine and loud ringing ears. The pain was excruciating all night.”  She adds, “Obviously the chemical poison was there even if I could not smell it.”

I’m sure every toxic illness sufferer has a similar story. How do we avoid such situations?  We need your help, and helping us helps everyone. My vote is for stronger regulations about what can be sold and greater discernment on the part of consumers about what we buy and use. Let’s try that.

How Far Away is Far Enough?

Evidently, I haven't written a blog post since November, which is not-coincidentally when my sons and I made the decision to sell or rent out our respective houses and find a shared-but-separate home together. Since that time, I've been fairly consumed with the logistics involved in making a move. I've written about housing enough in the past that I don't think I need to rehash all the difficulties involved for people with chemical illness. It's a huge issue, and I would truly appreciate prayers for the process.

One of the initial challenges my sons and I are encountering in the house hunting journey is the difficulty of finding a home far enough away from highways and other busy roads. Unfortunately, it's difficult to say with precision how far away is far enough, even for people without chemical illness. Traffic pollution is a significant health issue, both because it's so hard to avoid and because it contains a complex mixture of both gaseous pollutants and fine particulate matter. Here's some of the information I've found:

• A publication by the National Resources Defense Council notes that health effects related to traffic pollution include cancer, heart disease, asthma, decreased lung function, pre-term birth, birth defects, and increased mortality related to such factors as heart attack, stroke, and  pneumonia.

• The publication notes that dramatically elevated pollutant levels are generally found within 500 feet of busy roadways, but under certain conditions can extend much further.

• An article in the Digital Journal notes that people living within 300 feet of major roadways have higher rates of respiratory conditions, allergies, heart disease, and certain types of cancers.

• The author reports that a California study found that in the early morning hours, traffic pollution travels a mile or more from the highways.

• The article also states that the American Lung Association's 2013 "State of the Air" report determined that living or working within 0.3 miles of a highway or road is "more dangerous than people have been led to believe."

• A Time magazine article reported on a study finding that children whose families lived within 1,000 feet of a freeway when they were born were twice as likely as others to have autism.

• The Southern California Particle Center and Supersite (SCPCS) notes that many factors influence exposure to traffic pollution. These include weather conditions, such as temperature, humidity, and the speed and direction of the wind. Whether a home is upwind or downwind of the roadway is important, as is the construction of the house and the type of filtration system it has. Whether people are outdoors during peak traffic times or indoors with open windows also affects exposure levels.

So how close is too close? The SCPCS concludes that "scientists cannot say exactly how close is 'too close' at this point" and that "the closer people are to the source of traffic emissions, the higher their exposure is to many of the constituents of exhaust."  Studies indicate that vulnerable populations, such as children, the elderly, or those with pre-existing health conditions should be especially careful. An article in the American Journal of Respiratory and Critical Care Medicine notes that exposure to traffic-related pollution can contribute to the development of COPD and that enhanced susceptibility is seen in people with asthma, which might be expected, and diabetes, which seems to me a less obvious association. Although I haven't seen this advice in print, I've been told that one expert in toxic illness recommends that those of us who suffer from MCS live at least five miles from a highway, which seems like good advice that can be extremely difficult to follow, especially when taking the needs of other family members into account.

Mitigating the health effects of traffic pollution, especially for those not planning a move, isn't easy. Avoiding as many other sources of chemical exposures as possible will help lower the overall toxic burden on the body. Good air filtration can help, as well, and planting vegetation can also be of some use. Although, in general, indoor air pollution is higher than that found outdoors, those living near busy roadways may find it prudent to shut windows and stay indoors during peak traffic hours.

To a degree, the issue seems to be gaining more attention. As I noted in a previous post, some state and local authorities are beginning to address the issue of building schools near major roadways, while others continue to ignore the risks. Compelling evidence of health effects does not appear to be enough, in and of itself, to consistently motivate action. Perhaps a growing awareness of the issue will inspire parents to raise the issue and apply pressure when decisions are being made.

Will the pollution from busy roadways become less problematic as electric and hybrid cars increase in popularity? Yes, to a degree, but some experts conclude that fine particulates from tire wear and roadway dust may continue to be an issue. I'm personally not pinning my hopes on a quick decrease in levels of exhaust fumes and am going to continue to pass on homes that are too close to busy roadways, no matter how well they fit other criteria. I just wish it weren't quite so challenging to figure out how far away is far enough.

Encouragement and Dismissal

In the seven months since I lost my husband, I think I've managed to maintain a fair degree of emotional stability. There are definitely peaks and valleys in this journey, however, and a month or so ago I experienced a Very Bad Week. During that week, I wrote most of this blog post, but decided I should probably let it sit a while before posting it. Looking at it now, I do think that the issues raised during my meltdown might be helpful to discuss even though the emotional storm has passed and I’m currently feeling much less angry at the world.

The primary question that I examined during my Very Bad Week was why, when I'm struggling, the same phrase, such as "God has a plan" can sometimes sound like encouragement and sometimes sound like dismissal. I realize that messages are interpreted by hearers, and that the mood I'm in or my personal history can influence the way I perceive a statement. Still, I do think it's wise for all of us to do what we can to increase the odds of our interactions with others being perceived as helpful rather than hurtful. Here are some of the factors I see as important:

·    Validation – I believe that validation is the key difference between encouragement and dismissal. Encouragement acknowledges the reality of a difficult situation and corresponding negative emotions, while dismissal minimizes them. Validation communicates the message “You have a problem,” while dismissal can communicate “You are a problem.”

  

      As part of my work, I occasionally have reason to write about the psychological intervention known as dialectical behavior therapy, or DBT, which is an offshoot of traditional cognitive behavioral therapy. Studying DBT has helped me understand the power of validation. An article on the development of DBT notes that some patients found cognitive behavioral therapy's singular focus on change invalidating and responded with anger or withdrawal. The developer of DBT addressed the issue by adding validation strategies, which communicated acceptance and the acknowledgement that a client’s emotions and behaviors “made real sense in some way."  The National Institute of Mental Health reports that a comparison of DBT with other strategies in patients  with borderline personality disorder found that DBT reduced suicide attempts by half and more than halved the therapy dropout rate.

I can best understand the importance of validation by remembering the purpose of pain. Pain exists to be acknowledged. It tells us that something is not functioning optimally and alerts us that some sort of action needs to be taken. The pain of appendicitis tells us to get to the hospital. The pain of a sprained ankle tells us to stay off of it so it can heal. Emotional pain can play the same role. When we refuse to recognize the pain in ourselves and others, we negate its purpose.

·    Timing of suggestions – It isn't wrong to urge people to think positively or to offer suggestions and advice for addressing an issue. I think that we're more likely to listen to suggestions from each other, though, when we first feel that we've been heard and understood. So many of the Psalms follow a pattern of lament and complaint yielding to acceptance and praise. It's important to get to that place of peace, but I think it's unrealistic for us to expect people in pain to start there. When we give suggestions too soon, especially if they seem like clichés (“Just trust God”), it can feel like we’re in a hurry to end the conversation and move on. It can communicate dismissal and lack of real concern. Encouragement holds back on giving suggestions until validation has taken place.

·    Listening – The more we understand the problems and emotions of another person, the more real encouragement we can offer. It’s easy to assume that we know what someone else is feeling, but the only way to approach true understanding is to listen without interrupting and to ask questions when clarification is needed. What’s the main emotion someone is feeling?  Fear? Anger? Rejection?  Are there beliefs or past experiences that contribute to these feelings?  Encouragement takes time to find out. “Active listening” which involves paying full attention to the words of another, then re-phrasing and repeating them for verification can be very helpful.

·    Belief – Although it sounds obvious, I think it’s easy for us to forget sometimes that people are the ultimate experts on their own lives. If someone tells me that they always get depressed in April, it’s important for me to believe that, even if my own worst month tends to be October. As I wrote in a previous post, it’s wise to remind ourselves that people can experience the same situation in very different ways and to believe the experiences of others, even if they differ from ours. This can be a significant difference between encouragement and dismissal.

·    Equivalence – Finding commonalities is important in relationship building. The problem, though, is the tendency to make commonalities into equivalence. Yes, to a large degree pain is pain. Surely, though, we can agree that losing a pet is not equivalent to losing a child and that having the flu does not equip us to understand the experiences of a cancer patient. No matter how well-meaning our intentions, when we say “I understand how you feel because . . .” and the “because” is something that doesn’t seem equivalent at all to the hearer, it can feel like the reality of the problem is being minimized and dismissed.

·    Assumptions – Sometimes people minimize a problem because they assume there are untapped resources for solving it. These assumptions are not always entirely logical. In the chemical illness arena, for example, I often find that people assume that others maintain non-toxic homes I can enter despite the fact that their own homes are not toxin-free. I hesitate to make this next point, because I’ve had some wonderful help from family and church members, and I’m extremely grateful for it. During my Very Bad Week, however, I got the feeling, rightly or wrongly, that the government expected my family to take care of me, my family was relying on the church, and the church assumed I would find help from the government. When we volunteer to address a need it generally communicates encouragement, but when we volunteer someone else it can feel like dismissal.

·    Platitudes – It’s easy to fall back on phrases that contain truth, but that have been repeated so often that saying them may communicate a lack of thought or attention to the realities of the situation. Often, the truth contained in a phrase is nuanced. “Everything will be OK” is true, for example, if we take the long view. There’s a promised life after this one, full of joy and free from pain. It’s not true, however, that when people experience difficult circumstances they are then guaranteed no more difficulties in this present life. We all want to believe the world works that way, but scripture and observation tell us otherwise. None of us can see the future and promise someone else freedom from struggle.

·    Prayer – Without validation, even prayer can be used in a way that feels like dismissal sometimes. When someone takes time to listen to and acknowledge a problem, then says, “I’ll pray for you,” it can be deeply encouraging. When someone says “I’ll pray for you” without first acknowledging the depth of the issue, however, it can feel like an attempt to avoid engagement. Actually taking the time to pray with someone can be very meaningful and encouraging, especially if the prayer expresses a true understanding of the issues involved.

To everyone who has encouraged me by listening to my concerns and validating them, I offer my sincere and heartfelt thanks. To people I’ve failed to encourage effectively, I offer my apologies. I hope we can all get better at this.

Disability

Many people have asked me, through the years, why I’m not “on disability.”  Since my husband died, the questions have increased.  Although everyone’s situation is unique, mine may shed some light on the struggles of others, as well, so I’ll take some time to explain the issues as I understand them.  I’m certainly no expert on the subject, but I’ve done enough reading and I’ve had enough contact with people going through the process that I think I understand the basics and can take a shot at laying out the options.  This may take a while, so if you’re not interested in the topic, you might want to bail out now.  Otherwise, pour yourself a cup of coffee and settle in.

Disability Programs

There are a number of different ways that people can receive financial assistance after becoming disabled.  Each program has its own set of qualifying criteria, and people who meet it can then apply for assistance.  The major programs include the following:

o   SSDI - Usually, when people speak of “getting disability,” they are referring to the program known as Social Security Disability Insurance, or SSDI.  To qualify for SSDI, applicants must have worked for employers who paid Social Security taxes for them, or have paid self-employment taxes if they worked for themselves.  Qualifications also include a long enough and recent enough work history. The amount paid to those who qualify for SSDI is based on a formula which includes the amount that recipients earned during their working years.

Personally, I don’t qualify for SSDI because I was a missionary when I became ill, and my mission board didn’t pay into Social Security for the married female missionaries.  A similar situation is faced by stay-at-home parents who become disabled.  People working traditional jobs when they begin feeling ill may face a different problem.  As they become increasingly disabled, it’s common for people to cut back on their working hours or to find less-demanding and less-well-paying employment.  Often, by the time people give up and apply for disability, the amount they can receive is lower than it would have been if they had not continued trying to work.

o   SSI – Those who don’t qualify for SSDI may qualify for Supplemental Security Income, or SSI.  Eligibility for SSI is based on income and assets.  SSI looks at family, rather than simply individual income, and while my husband was alive and working, our income was above the limit.  Currently, I don’t qualify because I have more than $2,000 in assets, which is the maximum amount individuals are allowed.

o   Early survivor’s benefits – When workers retire, they are generally eligible for Social Security payments.  If they die before retirement age, their widow or widower is entitled to survivor’s benefits based on the deceased worker’s earnings history.   Generally, a widow or widower is eligible for survivor’s benefits (at a reduced rate) at age 60.  However, people can apply at age 50 if they are disabled.  This is the program through which I could apply. Like other Social Security payments, the full allowable amount can only be received at retirement age, and the sooner that recipients take benefits, the lower the amount will be (and will never increase, except for inflationary adjustments.)  As an aside, sometimes people confuse survivor benefits with spousal benefits, but they are different things.

o   Private disability insurance – It’s possible to purchase insurance policies that cover future disability.  These policies may be short-term disability policies, which have a maximum payment duration of no more than two years, or long-term disability policies, which can pay lifetime benefits, in some cases.  Disability insurance can be purchased on an individual basis, or may be provided by an employer.  A Forbes article states that payment is usually about 60% of an individual’s former salary.

o   Worker’s Compensation – If an injury or illness occurs on the job, people may be covered by worker’s compensation.  As the Forbes article notes, however, fewer than 5% of disabling accidents and illnesses are work-related.

The Application Process

After the initial qualifications have been met, the question becomes one of the nature and severity of the disability.  It is much more likely for approval to be granted based on some conditions than on others.  The Social Security Administration states that “we maintain a list of medical conditions that are so severe they automatically mean that you are disabled. If your condition is not on the list, we have to decide if it is of equal severity.”  They must also decide if applicants can do the work they did previously or are able to adjust to another type of employment.

Winning a disability claim, for any condition, isn’t easy.  The Social Security Office of Retirement and Disability Policy reports that between 2001 and 2010, 28% of applicants were awarded benefits at the initial claims level.  Of those that appealed, 3% were awarded benefits at the reconsideration and 13% at the hearing levels. The experiences of others with chemical illness leads me to believe that receiving disability for the condition isn’t completely impossible, but is definitely challenging.  It can be a multi-year process and can require doctor’s examinations, court appearances and other activities that are quite difficult for those with toxic illness to accomplish and that can make a sufferer’s condition worse.

In a book relating her chemical illness journey, teacher Lorraine Smith recounts her battle for compensation.  She speaks of visiting a doctor who laughed out loud when she described her health problems.  The doctor also wore an after-shave lotion that made her feel weak and dizzy, and when she mentioned her problem, the doctor said he was we­­­aring a “special fragrance” that didn’t cause reactions.  Smith also describes her time inside the courtroom, which was filled with people wearing synthetic fragrances. She mentions her need for a fragrance-free environment and notes that it would have helped to have access to fresh air, perhaps through an open window, and would have been nice to be scheduled as the first case of the day, to minimize exposure time.  She notes, “Without these provisions, I was actually being asked to perform tasks that were the very nature of my disability.” Exactly.

The fight for disability is also hindered by powerful adversaries with strong financial interest in downplaying and belittling chemical illness. In her enlightening paper entitled Multiple Chemical Sensitivities Under Seige, Dr. Ann McCampbell writes, “Perhaps the area where the chemical industry is most aggressively fighting MCS is in the courts.”  She notes that in addition to direct attacks on plaintiffs’ credibility, industry personnel file briefs, supply “expert” witnesses, and distribute anti-MCS literature to witnesses and attorneys.  The chemical industry is also very active in attempting to revoke the medical licenses of doctors who acknowledge and treat toxic illness.  This makes doctors understandably skittish about supporting their chemically ill patients who wish to file for disability.

Among my other significant health conditions is chronic Lyme disease.  Unfortunately, the politics of that condition aren’t much better.  Since this blog is primarily focused on the chemical toxicity problem, I won’t expound on the Lyme wars.  Anyone interested might want to read the novel Over the Edge or watch the documentary Under Our Skin.

The Financial Picture

Applying for disability can be not only logistically challenging, but emotionally challenging as well.  It can feel like giving up and acknowledging the permanence of a condition.  It also caps financial possibilities.  The Social Security Administration states that for 2014, the average monthly payment for those on SSI is $534 and the average disabled widow makes $713. The average payment for SSDI is better, at $1145, but is still considerably lower than many Americans would consider a living wage. People receiving disability payments are allowed to earn a small amount of money, but not enough to make a significant difference in their standard of living.  Everyone I know on disability struggles.  Public housing is generally not accessible for people with chemical illness, and even living with family is often not possible.  Many people live in their cars or in tents.

Disability payments can be a lifeline and a great help to many people.  I’m glad the programs exist and it’s possible that at some point I’ll decide my only option is to apply.  I do think it’s helpful, though, for people to understand that being disabled doesn’t always mean qualifying for benefits and that receiving benefits doesn’t mean an end to financial challenges. 

Being disabled by illness isn’t a lot of fun.  I don’t recommend it.  Seriously, life happens and it isn’t possible to prevent all illnesses and accidents.  It’s definitely possible, however, to lower the risk of developing a wide array of health conditions by lowering toxic exposures.  There are many, many reasons to take the issue seriously.

The Journey

I’m about to celebrate a birthday, which has directed my thoughts to all that transpired since the last one. Last year, on the day after my birthday, there was a vote which led to a church split, which is a significant event for church staff members and their families. Then we had a fire. Then my husband died.

It’s been quite a year.

The fact that the path my life has taken has been so hilly and full of curves has made a recent series of events seem even more interesting than it might have been otherwise. Here’s the story.

Dan’s sisters kindly invited me to join them on a trip to Yellowstone, so I gratefully packed up my tent. My oldest son was able to join us and flew into town so that he could drive my car. He had a couple of audiobooks and a variety of music for us to listen to along the way.

We traveled with the others and were usually following rather than leading. As is often the case when exploring a new area, getting from Point A to Point B sometimes required turning around. At one point, just as the lead car was stopping to reverse direction, the singer we were listening to sang “Turn around.”  We laughed at that, and turned around.

The next day we found ourselves once again unsure of the route. We found it amusing that, as we were wandering about, the music asked “Where are we?” and added “There are mountains.”

Those who’ve been to Yellowstone know the excitement of seeing animals in the wild. They also know that the excitement is sometimes tempered with impatience at the traffic jams caused by people stopping in the middle of the road. We were following a car that slowed to watch some buffalo. At that moment, the lyrics coming through our car’s sound system were “Don’t slow down.”

We got a kick out of this narration of our trip. As we headed for home, though, things got even more interesting.

Although we had arrived by a different route, we decided to return by the roads that took us through the Tetons and near the Jackson Hole area of Wyoming. We stopped and enjoyed the beauty. Then we got in the car, turned the music on, and heard the singer sing about being led to Jackson.

The strangest incident occurred later that day. We continued our drive through Wyoming, passing through the Wind River valley. We wondered aloud whether to pronounce it with a short vowel sound or long, unsure of whether the river was named after a breeze or the circuitous route it took. We got our answer. We were listening to an audiobook about an astronaut stranded on Mars. The narrator began discussing a battery—a battery made by the Wind River Company (pronounced with a short vowel sound, by the way). The Wind River mentioned in a book about Mars?  My son and I stared at each other in amazement.

There was one day left on our trip. By this time I expected a narration moment and I got one. We had been listening to music and I had been falling asleep. I didn’t want to sleep through the end of the book, though, and I knew we needed to start listening to it soon if we were going to finish it before we got home. As I tried to rouse myself so that we could make the switch, the singer sang “I’ll try to stay awake.”

Was all that coincidence?  Some will say so, but that’s not how I see it. I think a merciful God was simply saying, “I see you, Martha. I’m with you on this journey.”

I have no idea what this next year holds. There could be more disasters or a miraculous healing. There could be both. Whatever comes, though, I’m confident that God is with me.

He’s with me on this journey. He's with you, too.