Category: disease

Lessons Learned

Dear Albert,

I’m am so glad your son is safe. Thankfully, most wounds, both mental and physical, heal with time. Since kids don’t always think of the consequences scars can be important reminders, often of one’s youthful imperviousness to peril. They also make us unique and serve as conversation pieces that offer subtle lessons for others to hopefully learn from. It seems like pandering but it has always held true for me that experience is the best teacher, and similar to a college education, these lessons definitely do not come cheap.  Don’t beat yourself up. As parents, I am a firm believer that no matter what approach you take in raising your kids, you fuck up and consequentially, fuck up your kids. Mine have now lived enough to call me on my shit. Yet another example of the circle of life.

After reading your posts I always reflect on the similarities of issues that drive our thoughts, reactions and even our wallets. It is easy to attribute this to age, education or other privileges we are certainly lucky to benefit from, but I hope that we are striking a deeper chord and raising topics or concerns that will resonate with others. I suppose time and where this “blogventure” takes us will tell.

I also have good news to share, I have a part-time job as assistant to a terrifically talented and kind author. I have spent the last few weeks learning some of the publishing world and working on organizing myself in order to help organize him. I am fortunate to witness the vivid emotion and deep introspection that is derived from the arts, something we are sorely in need of today. I am also painfully cognizant that writing is a skill that takes dedication and practice to excel at. Another thing I am thankful to you and this blog for.

I think about how central having a purpose is to our lives. Being responsible, to someone or something keeps our minds occupied, gives us meaning and hopefully gives us pleasure. These past discussions have focused a lot on our kids and defining ourselves as they transition to adults. While I have never been one of those mothers with a laser focus on their kids’ activities the blog posts have been a testament to the void they leave as they strike out on their own. It’s time once again to define myself as an individual, forced to measure success by my own merits and my own scale. That is a bit daunting.

Do opportunities present themselves at right time, or are we just more open to the possibilities? I’m not sure why or how things happen when you seem to need it most but I am grateful when the stars align. For me this job is more than a list of activities or set of tasks to accomplish, it is fundamental to my well being in the following ways:

It is an important distraction from the pain. All too often I can find a myriad of reasons (not excuses) to avoid doing something. The pain and the fatigue are very real and often take precedence but having something to focus your mind on is a blessing. I feel a huge sense of satisfaction and resolve when I look up at the clock and I have spent 4 hours working and not thinking about stiff legs or a sore back, plus I’m exercising my brain!

It provides an important sense of financial independence. I am not implying that I have suddenly changed our tax bracket by working but it allows me to have some WAM, Walking Around Money.

The interaction with people and knowledge acquired hopefully makes me a more interesting person. At the very least I find myself more interesting.

I  chose to feed my ego with my first paycheck!

Fondly,  Sophia

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Standing Out

Dear Albert,

Thank you for sharing such a personal account of your adventures with your son. These memories allow me to travel vicariously to unattainable locations, filling my mind with harrowing images of clinging to a mountainside buffeted by the winds and visions of azure skies, jagged peaks of violet and brilliant white. Your lessons of perseverance and strength are of value to us both.

My passion has always been the lure of travel. I love everything about it, investigating countries and the treasures they hold within their borders, the often tedious and unforeseen transportation challenges en route and eventually the destination itself. The one advantage to knowing that you have MS for as long as I have is that the disease slowly creeps into your life, forcing you to accommodate to its demands over time. By knowing that it would eventually catch up to me I made a concerted effort to do as much as I could, not waiting for the right time or if and when there was enough money. A definite highlight was a 7-month trip around the world with my husband and two kids. We meandered with a general direction but no real agenda, lingering where we felt a compulsion to stay and discover our temporary home. While I love to travel without a fixed schedule, I must admit, most people would decline a repeat invitation to travel with me. My reputation was garnered as a result of the fluid and unstructured nature of my travel style which has led to less than comfortable nights in cars, bus stations and questionable hotel rooms. This unencumbered means of travel has also led to the discovery of amazing places and unexpected adventures.

For me, this trip marked the last time I would travel without serious limitations to my mobility. I miss the freedom of being able to pack up and go, not worrying about stairs or worse, inaccessible toilets. It is easy to opt out. It’s easy to make excuses that it will be too hard (mostly for those that travel with me). It’s easy to convince yourself to stay home. To become invisible.

I refuse to be invisible! I already tried this and was frightened by just how easy it was to allow yourself to feel obsolete. Quit your job, refuse invitations from your friends and make excuses for not participating and after a short time people will assume you aren’t coming. I was embarrassed for being in a wheelchair, as if somehow it made me weaker. Somehow, I had made a choice to give up and lost my ability to walk because I didn’t work hard enough. It took a long time to forgive myself for this self-imposed sentence. If I am truthful, there are still days when I give in to these fears and sulk around my house making myself and everyone else miserable.

This weekend was not one of those times. We had glorious t-shirt weather in January. Outside patio, beer drinking weather, and I for one was delighted to be out and about enjoying it. With a cold beer in my hand and the sun on my face I looked around, no one was gawking, no one really noticed me. If I was invisible it was not because I stood out, but because I blended in. If I am not wanting to be imperceptible I now realize it is up to me to do something to stand out. I am like any other mid-life adult who needs to work harder to continue to define their life and redefine their goals. The traumas I have saddled myself with are excuses and have allowed me to opt out. Not because anyone expected me to. Not because I couldn’t do the work but because I have allowed myself to buy into the excuses and the trite role that we associate with disability.

My next trip will be to Guatemala. I will research hotels with accessible toilets but not much else. I will probably not find a whole lot of people interested in going with me. I will be free, adventurous and utterly visible!

Sophia

Letter from a friend

My Dear Friend,

I think about death, a lot.  Not in a morbid way, nor because I believe I am dying; rather because I ponder my life and what it has in store for me.  Thirty-two years of living with the unpredictable manifestations of Multiple Sclerosis leads to constant conjecture as to how my body will react to its environment.  To date I consider myself lucky to be only moderately affected by this shit disease. My thoughts regarding the volatility of one’s health have been heightened by my step-father’s latest visit to the hospital. He is a double lung transplant recipient with no immune system whose slightest exposure to any virus results in a death spiral he then stubbornly fights to reverse.  Each bout leaves him weaker and weaker until only a semblance remains of the man he once was.

I ask myself why someone would want to live at any cost.  The physical, emotional and financial toll that comes with catastrophic illness is all encompassing.  I am certain that I do not want to subject myself or my family to anything of the sort.  Throughout his illness my mother has dutifully remained by her husband’s side, albeit at times, begrudgingly. Is this extra time alive a burden or a gift?  For the affected person?  For the family?  For the healthcare system that racks up millions of dollars in charges?

While I am nowhere near requiring that level of care I am fully cognizant of the impact my illness has had on my family.  For the past several years I have been increasingly dependent on help from others; to drive me places, to reach a top shelf, on bad days to help put on my shoes.  My entire life I have been fiercely independent, almost to a fault.  Choosing to hide my disease and any weakness that resulted until it was impossible to do so any longer.

It’s funny, this blog is like a coming out party.  Announcing to the world “Hey! I have MS!”  I imagine as most coming out stories it is quite anticlimactic since everyone already knew or at the very least had a strong suspicion.

Now that it’s out there and my new reality is one of being dependent on others, I am having to learn a new role.  One that entails asking for and receiving much help.  I am having to grapple with my feelings of inadequacy and weakness.  As a wife and a mother, I always hoped I would be the caregiver. Quick to solve problems, take kids to the doctor, cook a terrific meal and anything else that popped up.  It’s ironic to find yourself on the opposing spectrum of that scenario.  But it’s not the role reversal that bothers me.  It is the fear that my incessant need for help will make my family resentful of me.  As I write these words I fully realize that this is my and only my neurosis, however, it is still a deep-seated fear. If I am to be truthful with myself, these thoughts are not only damaging but somewhat self-centered and unfair to those who love me.

So how do I become more gracious?  How do I not only willingly accept help, but also learn to ask for it?  It is my hope that in spending some time contemplating this I can better come to terms with my limitations but more importantly redefine the gifts and talents that I know I still have.  In receiving it is important to acknowledge the gift the others are giving you.  I will try hard to be worthy of those gifts.

Sophia