By Harriette J. Schwartz
When diagnosed with Multiple Sclerosis in 2006 at the age of 56, I knew that unlike the flu, this would be an ongoing battle with effects that would reach further into my everyday life than I could initially imagine or comprehend. It scared the heck out of me, and the initial pity-party that ensued was a haze I had difficulty removing myself from. When the fog cleared and the strong woman in me returned to the forefront, it set me on a course of action. This was mostly a process of learning to live with the disease by seeing how far I could push my personal envelope. I looked in the mirror and well I was no longer that 19 year old girl who walked ten miles along Route 17B to attend Woodstock in 1969, but who amongst us elders is? Yet, I was still here and able to do everything I needed to from day-to-day, well almost. As time went on, I discovered that my levels of energy were greatly reduced and that my immune system was not exactly as strong as it had been. Suddenly I became prone to colds that turned into bronchial asthma; or numerous bouts of painful urinary tract infections than I ever had previously among other things.
I am unable to work a job outside of my home anymore. SSI disability which I receive is not quite enough to sustain me financially. Thus I have had to find ways to add to my income from home and so far between a script transcription service, my writing and other things, I’ve managed to successfully walk that line of earning money without disturbing or losing any of the disability, by carefully following their rules and guidelines on working and collecting SSI. I’ve been lucky, so far.
The onset and events of MS are termed, Exacerbations. I am keenly aware of my limitations and so far am fortunate enough to be able to say I truly believe that the once-a-week Avonex injections I was put on just after my first exacerbation has kept my MS from progressing so far. This is not to say I am fine; it is to say I am still able to function within limitations. However, I did not realize what the reaction of others in my life would be. People who saw me at first, witnessing my inability to move without a walker or a cane, seeing my fatigue, seemed appalled. My initial exacerbation was an almost a crippling affair but did improve in time, with treatment and in the first year, 4 hospital stays. Now that I appear and feel somewhat “normal”, can drive anywhere and walk without even the use of a cane, it is thought by many that I am, “better”. Since a lot of my MS is not visible to others, their assumption is, I am both normal and better. I am certainly improved, but I am never going to be without the effects of this disease again. That is now a fact of life and I can live with it just fine. My neurologists have told me that because of the late-onset I may not outlive all of the effects of Multiple Sclerosis. Armed with my personal knowledge and knowing a lot worse could possibly ensue I take this all in stride on a day to day basis. I am on my way, but it is the others in my life that need help adjusting.
MS can be an invisible disability to those who do not have it, particularly if your symptoms do not have you in a wheelchair. No one else knows if I am not sleeping well; if my body is tingling or if I am stiff when I sit for a period of time. People do not get why I am at times suddenly so fatigued I almost fall asleep standing up. With an immune system that barely functions if at all, I keep lots of Lysol and Clorox Wipes at the ready. I’ve added daily doses of zinc to avoid colds and cranberry capsules to keep those UTI in check. When faced with a known illness I remove myself or the sick person from my presence, if possible. This is not a selfish but rather a self-preservation mode and it is working for me, so far. It is really just the tip of the iceberg I employ to avoid illness. After all, there are so many more people one comes in contact with on the street, in stores and you simply have no knowledge of what sickness they may carry. So much is simply airborne and unavoidable. This is the first winter I haven’t been faced with a serious upper respiratory infection that has to enlist the aid of several runs of antibiotics as well as steroids to alleviate and thankfully not even one UTI!
I have been lucky and only I myself know that MS gives me good days and some not so good ones. Sometimes I must communicate this to others so they can understand. So many do not apply the term “chronic” nor can they comprehend how it affects my life and interaction with them. I may look like I’m in the pink, but oftentimes, I feel like I’m stuck in a gray area. I do not walk around in a constant state of, “I am sick” either. Instead, I seek that even keel which allows those close to me to understand just what I’m capable of on any given day and how susceptible to change this can be. This may necessitate a change of plans at a moment’s notice, but not by choice. It is the nature of the chronic beast that is MS. I still love you as much as I used to, but today is just not a “can do” day for me. Then too maybe a sudden onset of fatigue slows me down to a crawl. Bear with me I am sick but I just don’t advertise that fact much. I will give them signals only when and if I need to.
I guess I’ve just had the time to wrap my head around it,after dealing with it for nearly 7 years now. I understand that I cannot beat MS, that instead I must join it in order to survive and go forward. None of us age without having something to deal with physically and mentally in life, it goes with the territory. I know that this MS is 100% of the time, but as they say I have the disease, it does NOT have me, not yet anyway. I rarely talk about it because I feel strong enough most of the time to say that I am “still kickin.” My mom told me a long time ago to always answer “Great or fine!” when someone asks “How are you?”, and I do. Most have their own life “tsuris” (say surris it is Yiddish for “trouble”) and their inquiry is really just their way of being polite. Would that those who love and know people with this chronic disease understood this response is really just what we want to feel and what they want to hear, but it is not always the whole the truth. The truth is that chronic truly is always 100 percent of the time.