It’s hard to say exactly how the events of 2004 affected me, but I do know that God mercifully met me at crucial times and in creative ways, and so impressed his love upon my heart and mind that I couldn’t help but love him with new abandon and am compelled to tell of it.
The Long Answer
January 2007
Iwas diagnosed with MS in mid-June 2006. The results from a spinal tap I had in January 2006 provided the missing piece of the ‘puzzle’ that my neurologist needed to finally feel confident in making a diagnosis of MS. I haven’t looked like a ‘classic’ MS case right from the beginning, which is why I had to undergo an unorthodox brain biopsy three years ago following inconclusive CT scans and MRI.
In the middle of July, I began taking a medication called Betaseron—an interferon drug I inject every other day. During the first few months, the side effects (mainly flu-like symptoms) were manageable with Tylenol or Ibuprofen and thankfully haven’t been a huge issue for me. However, Betaseron hasn’t shown any benefits either, and a scheduled MRI later in January will show what course the disease has taken since my last MRI a year ago.
Regardless of what the MRI reveals, my symptoms have become worse since starting on the Betaseron, and disease progression has been insidious these last three years. The rate of decline varies slightly, but the deterioration has been very apparent to me—at times from month to month, sometimes from week to week—and seems to have accelerated since starting the Betaseron six months ago.
To try and tell you what ‘feeling worse’ means is very difficult. When people kindly ask in passing how I’m doing, I usually give them the ‘short answer’ and say something like, “Okay” or, “could be worse,” or I deflect their question by talking about something our kids or our family has recently done; all in an attempt to dodge the question, which is so difficult to answer. People often tell me that I look good, which is very kind of them, but it’s also one of the truly frustrating things about this disease. As of yet, there is no glaring deformity or disability to indicate that anything is significantly ‘wrong’ with me. But something crucial has been crushed.
My symptoms:
• Balance issues; I constantly feel like I’m on a floating dock, and often lean on things for stability.
• My spatial awareness and depth perception are messed up, so I frequently bump into or break things. I often feel crowded and negotiating my way through crowds is a challenge.
• Every step requires thought, and I increasingly avoid crowded places like malls, parties and the church foyer on Sunday.
• Deteriorating eye/hand coordination.
• Numbness and pain in my left hand, arm, shoulder, neck and face— especially in and around my eye.
• Increasing weakness in my left hand, arm and shoulder (My neurologist seemed quite concerned about this.)
• Vision difficulties; it seems like both eyes aren’t always focusing on the same thing, like my brain can’t decide what to focus on, and my eyes have become photosensitive. Both of these things cause eye pain and headaches.
• Difficulty processing excess sensory stimulation; so again crowds are an issue and Saturdays are sometimes difficult because it can feel overwhelming when all six of us are at home for the whole day.
• Multi-tasking—something I used to be quite good at—is becoming a thing of the past. Frustration sets in if I try to give my attention to more than one thing at a time.
• Headaches; constant sore neck and eyes to varying degrees, most severely in the late afternoon and evening. I’ve been unable to equalize the pressure in my ears for almost a year now and have constant pain in my temples, cheekbones, and ears.
• Tightness in my throat muscles for three or four months now; this may or may not be related to MS. My sleep is disturbed; usually not too badly at the start of the night, but I wake most mornings around four or five.
• I sense challenges in some of my cognitive functions like concentration and memory, but nothing too serious yet.
Just about all of these symptoms have been with me to some degree since the middle of November 2004; gradually escalating in intensity since then with no sign at all of a remission. I distinctly remember the day, shortly after my return from my brother’s wedding in the Cayman Islands, when I felt some tingling in the little finger of my left hand. Within days, the imbalance began and since then every day has been the same or worse in terms of how I feel the disease. It has become second nature to me, and I really don’t remember how I felt before all of this.
There are two kinds of MS: relapsing/remitting MS (RRMS), and progressive MS. (PMS). RRMS afflicts almost ninety percent of people with MS, and someone who has it told me that it’s the kind you would want to have, if you had to have MS. In June, I was tentatively diagnosed with RRMS in order to secure EDS (exceptional drug status) so I could start on medication. But as time passes, it appears likely that I have progressive MS, which is more difficult to treat. I’m scheduled for an MRI later in January, and then an appointment in mid-February with an interim neurologist who will treat me until a replacement is found for my current neurologist.
I imagine that in February we’ll discuss what my options might be in the event that I’m still not responding favorably to Betaseron. Of course, I continue to hope that remission is just around the corner. If or when it becomes evident that I have progressive MS, I suppose I will want to ask many questions about speed of progression, and what I can expect down the road. But I haven’t really wanted to think about that a whole lot, so I haven’t.
Life is certainly different now, but life is good, because God is good. The Psalm I’m reading this week is 146, “Praise the LORD! Praise the LORD, O my soul! I will praise the LORD as long as I live; I will sing praises to my God all my life long . . . Happy are those whose help is the God of Jacob, whose hope is in the LORD their God.” (Ps 146: 1–2, 5 NRSV)
If I lived a hermit’s life in a desert somewhere my health issues might be easier to handle in some ways, but I live in a house with five other people (thank God!) and this disease affects us all. God is graciously helping us all to make adjustments. Living with a chronic illness wears me down and renders me intolerant to many things. I am often someone I wouldn’t want to live with if I had the choice; an impatient, demanding and at times, belligerent person who sometimes feels she deserves a break because she has a personal challenge to live with. I don’t like this person and would like things to be different, but this is where I am—where we are—and truth be told, I don’t want to be anywhere else. God is faithful, even though I am not. His promises are sure, so I do not despair. “Whom have I in heaven but you? And there is nothing on earth that I desire other than you. My flesh and my heart may fail, but God is the strength of my heart and my portion for ever.” (Ps 73:25–26)
So there you have it; although the result is somewhat vague, this is my attempt to answer the question, “So Colleen, how are you doing?”—a question asked by kind, compassionate people with whom God has graced my life. It is a difficult question for