MS Strength

Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

This week at Joan’s chat room, things were a bit more serious as chatters talked about their troubles with their jobs. One woman in particular was having a rough time getting her workplace to understand her need for a certain schedule. Her union was giving her a rough time and it seemed necessary for her to seek legal action. In the Americans with Disabilities Act, disabled workers are protected under certain circumstances and can be given reasonable accommodations to perform their jobs. Disability in the workforce can be a very gray area, but knowledge of the Americans with Disabilities Act and proper counsel can help those with MS stay out in the workforce for longer periods of time.

If you are having trouble maintaining your job due to multiple sclerosis complications, you may be qualified to have reasonable accommodations in order to carry out your work. Contacting your national MS organization in your region of the world can help you to get pertinent legal information. The National MS Society in the U.S. can help American MS patients find out about employment rights, legal counsel, and the ADA. The Americans with Disabilities Act homepage can be viewed for references, and a toll-free information line gives callers access to live help.

I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.