On Mourning

Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

Reflecting…
In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.

“How Do You Do It?”

“How do you do it?” she asked. “Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?”

It is a question I get asked often, and there are a number of answers.

First, a rundown of what we’re dealing with.
The common perception of someone with one of the Neuro-Immune Diseases (NID) of Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), chronic Lyme disease or other tick-borne disease (TBD), is that it can’t really be as bad as we say it is, we’re lazy, or, we’re making it all up. Or, that we’re just depressed and “need to get out more.”

Nothing could be further from the truth.

Every victim of these very real, physically devastating illnesses I know actually is quite skilled in hiding their true level of discomfort and pain from their family and friends, struggling to hold on to some semblance of normalcy in their life until it simply becomes physically impossible.

Patients with mild ME/CFS, NID, etc, can sometimes work part-time, look after their families, and have a social life.

But for severely ill patients, that is not the case. Not at all. They ever so slowly get worse, and enter the phase we call “the living death.”

A really brief “refresher course” for those not familiar with our illnesses:

  • Many cannot leave their house except for medical appointments.
  • Most spend almost all day “vertically challenged” – either in bed, on the couch, or in a recliner, too utterly exhausted to move. There have been times I’m so exhausted, I’m acutely aware of the effort it takes just to breathe.
  • Most can’t cook for themselves, and some need assistance just to go to the bathroom.
  • Pain is usually a constant, even with the best of doctors – something many are lacking.
  • Many are severely sensitive to sound & light. They may eventually wind up living (if you can call it that) from their darkened bedroom, the shades drawn, speaking and being spoken to softly.
  • Cognitive problems get worse, and short term memory problems make things very difficult. Concentration, comprehension, “word-finding,” and spelling all become issues, and the more tired you are, the more pronounced the cognitive problems.
  • Me & Cherokee, about 1988


    “The Before Times”

    Virtually every patient I know was very active in “The Before Times, ” – what we call the years before these horrible illnesses blindsided us.

    Many of us were “outdoorsy” types – campers, hikers, runners, gardeners, and a disproportionate number of us were horseback riders (perhaps – or perhaps not – because a strain of Bartonella has been found to infect horseflies and be transmissible to humans).

    We were not lazy folks, generally speaking, and we’d all love to be strong and healthy enough to take up our previous pastimes. What I wouldn’t give to be able to ride again!

    But you know, we’d really all just be happy if we could function well enough to take care of ourselves, and not be a burden on the family or friends we’ve come to rely on for everyday care.

    I’m intensely grateful for the loving care my youngest daughter, Rhiannon, gives me every day, and her partner, Ben’s care, too, as well as the support I receive from the rest of my family.

    Some of us don’t have anyone, and suffer alone, in a sheer struggle for survival. My heart goes out to them, and if you are one, I urge you to get active online in some of the forums and facebook groups, and build yourself a virtual support network.

    Grieving My Losses

    I think an important first step in dealing with these illnesses is recognizing all that they have taken from you, and grieving your losses. And then, grieving for them again, because I don’t think we ever really finish the grieving process – it’s a spiral, not a circle.

    All those things I love to do, but can’t anymore – the horseback riding, the gardening, etc – periodically come up to be acknowledged again, and I try to remember that I led a life full of unique and rare experiences before I became ill, and to be grateful for what I had, rather than regret what is lost.

    However, there are always new things to grieve, as I get sicker.

    Many of us have been avid readers, but the ability to lose ourselves in a good novel is often one of the first things to go. When you can’t remember what you read the day before, or keep track of charechters, it becomes impossible… and yet another thing lost to these illnesses.

    Recently, my migraines and light and sound sensitivity have gotten so severe that I’ve lost the ability to watch TV, even with the brightness, contrast and sound down. I’d love to go to a movie, but haven’t in a long time, and doubt I could handle one.

    So, I acknowledge the losses, but I then let them go, and embrace what I can still do.

    Blogging

    Blogging has turned out to be far, far more than I thought it would. I started blogging just to keep my family updated on what crazy health stuff was going on, but then I found my voice… and I was found by fellow patients, some of whom have become dear friends.

    Many others have emailed or messaged me telling me how a blog post has really touched them, sometimes bringing them to tears (usually the good kind), often expressing that if they’d had the ability, they could have written exactly what I had. Sometimes people have questions, and I do my best to answer them.

    Slowly, the realization has come to me that maybe this blog was the point all along, maybe it’s my “work” here on Mother Earth. I always wanted to write, but never had the time. Now, I do, and plenty of subject matter.

    There are a lot of really sick people out there, suffering from these very misunderstood illnesses, and a lot of very odd “coincidences” and connections have been made to bring some of them into my life.

    I’ve seen that my writing is making a difference, which is huge. I may spend 90% of my day in bed, but I’m still having an impact in the world, and for that, I am so very grateful.

    Nature

    Mother Nature is strong medicine, and while I used to enjoy Her during epic horsetrekking trips or camping, now my options are more limited.

    But, that doesn’t mean they aren’t there! I’m blessed to live in the mountains I’ve loved since I was a child, with amazing views right from my bed. A screened in porch with a hammock-chair is well used, many times a day for very short periods of time (that whole “vertically challenged” thing).

    From there, I can watch gorgeous sunsets, the deer amble through the “yard,” fawns in tow, observe the nesting birds, flight of the hawks, occasionally spy the fox, and watch as the seasons change. A few steps away is the container garden on our deck, with fragrant herbs and flowers.

    Friday, I watched the Blue Moon rise above The Mountain, alone in the moonlit forest, and it was wonderful, if only for a little while.

    Beauty, natural beauty, is integral to my staying sane.

    Facebook

    I have many friends on Facebook, but most importantly, a strong, loving and supportive Circle of Sisters, most of whom are also ill. We catch each other when we stumble, cheer each other on, and commiserate over the pain. It is somewhat ironic that after being pretty much a loner all my life, with few friends, I now have more friends who I deeply love than ever before.

    I am gratefulfor each and every one, and all the Love they bring into my heart and my life.

    Creativity

    It may take me a month to do something a healthy person could do in a couple hours, but it doesn’t matter. What matters is that I work at it (usually “it” is crafting a bead from fossil ivory) as I’m able, 10 minutes here and there, and when I’m done, I’ve created something beautiful.

    Gratitude

    (Bet ya saw this one coming.)
    Maintaining an attitude of gratefulness for all that I do have – a loving family; wonderful, supportive friends; a home I love in the mountains I adore; good medical care; access to the internet with all its fascinations and distractions, etc – helps tremendously. When things get rough – and they’ve been very rough lately – I try to remind myself of all the good things I have.

    Sometimes…

    …none of that is enough. Sometimes, I wilt under relentless migraines that go on for weeks at a time, or get so frustrated at my inability to accomplish even small goals that I just want to scream.

    I’m not the perfect pillar of strength that some people seem to think I am. And like most of my more seriously ill friends, I’ve watched as I’ve become more and more of a burden on the people who love me.

    Those are the days I either contact one of my spirit sisters for support, vent to my mom, relentlessly sand a bead to distract my aching brain, whine a lot, reach for a klonopin…

    …or, all of the above.

    Getting By

    As one friend and I say, those are the days we get by, one breath… one moment… one hour…at a time.

    June: Tumultuous Times

    Life with CFS/FMS/chronic Lyme and other Neuro-Immune Diseases tends to eventually become incredibly boring, as your health declines steadily, more problems erupt, and you find yourself confined more and more often to bed, isolated, in pain, sick & tired.  Memories fade, the months become years, and pass in a haze of misery.

    But sometimes, things happen that interrupt the boredom, and they often aren’t good things. The last few weeks have been tumultuous times for me, filled with drama, trauma, and stress, but also filled with thankfulness and delight. The ups and downs have been quite the change from the quiet life of the chronically ill. Some of these I’ve already written a little about:

    • My shoulder pain has continued. A cortisone shot triggered a massive candida (yeast) flare, and  it was quite nasty to deal with. But it did help the pain… for a while.
    • I finally got an MRI done for the shoulder injury, and anxiously awaited the results, fearing a SLAP tear.
    • As June progressed, I faced the 2nd anniversary of my beloved canine companion’s passing.

    Then there are the things I haven’t yet touched upon:

    The Valcyte continues to help, increasing my cognitive functioning somewhat, making me more alert & aware. Physically, it’s decreased my recovery time from Post-Exertional Malaise from our weekly grocery shopping trips to one or two days instead of 3 or 4 days – a big improvement, as these things go. I’m still very sick, still bed-bound most of the time, but I at least want to do more and interact with the world more.

    Menopause? My body seems to have realized, as I approached my 48th birthday on June 25th, that I should be in menopause. I had pretty much convinced myself that menopause would never be an issue for me, partly because I had a 5 year lapse in my cycle, which seems to have been related to my pain medication, and partly because my body is so dysfunctional, why would it be an issue? Suddenly menopause hit me like a brick, and I was alarmed by a heavy period that lasted a month – and it takes an awful lot of blood to alarm me. The hormonal swings have been massive, worse than any PMS I’ve ever had – hours of tears, minutes of red rage, back to tears, and finally to a more or less stable state of mind, though more emotional than is usual for me.

    My 48th birthday was celebrated with a wonderful gourmet meal cooked by Rhiannon & Ben, everything I asked for (a whole Herb Roasted Chicken was the highlight) and more – even the forbidden fruit: caramel and chocolate covered apples! We’ve been sharing those, as sugar is off limits for those of us with systemic candida (yeast). We washed it all down with sparkling lingonberry juice, a gift from a friend for my last birthday, an amazing treat that tasted much like champagne – and we even served it in wine glasses! Much laughter and many smiles filled my room – a welcome change.

    I have struggled to accept my aging body and the dangerously close approach to that oh-so-important birthday in 2 years, my 50th.  But for one glorious day, I  embraced the aging process, gleefully trimming my hair shorter than it’s been in years, intentionally allowing the gray I’ve earned to show.

    Dental Woes: A lost filling in a tooth led to a very long and unpleasant visit to the dentist. The dental woes of those of us with CFS/FMS are not often discussed, but we often have them. You can almost pinpoint the exact moment of onset of my illness by the sudden rash of cavities that began. I was cavity free until I was 30. Since then, it’s been steadily downhill, and there have been so many fillings I’ve lost count, and two root canals. One reason for these issues is likely the medications I take, many of which cause extreme dry mouth, but it’s also because I’m immuno-compromised. I’m sure the periodic flares of candida & thrush don’t help matters, and then there’s the whole issue of mal-absorption, and the ensuing nutritional deficiencies.

    My mother wanted me to see her dentist rather than the sub-par dentist who I’d been seeing, so I headed out to her house, an hour away, to get the work done, and to discuss my possibly getting a laptop for my birthday as a present from my whole family. I still am waiting on SSDI, living on very limited income. But I need something small & yet powerful, with ample space to back up 10 years of business records from the home business I had to close in January, 2007, due to my illness. I’ve been mostly online – blogging, Facebooking and all – on my cell phone, from my bed. My beloved Vaio laptop, heavily used in my business, is now 6 or 7 years old. It’s far too large and heavy to use in bed, and is approaching the age of retirement. But small & powerful laptops don’t come cheap. I’d been researching them for months.

    On Tuesday, I cried in the dentist’s office as he worked on me. I can only recall crying in a doctor’s office one other time, despite the hundreds of appointments I’ve had. It started with “Well, you’re really full of surprises!”, and soon words like “deep pockets,” “scaling,” “de-calcification,” and a “still inflamed root” in a tooth that may need a 2nd root canal, along with a long list of cavities (6 in all – 3 filled that day & 3 to go) were added to my “treatment plan.”

    It was just so overwhelming, I couldn’t help the tears that silently fell down my cheeks. My wonderful mother held my hand, wiped my tears, and asked me if there was anything I needed. I think I might have broken her heart when I said, “a bullet to the head.”  Sorry, Mom. It’s hard to be strong all the time.

    A growing concern as the dental work progressed was the huge cost – I have no dental coverage; there’s none available for folks like me. Virginia Medicaid covers one thing as far as dental work: having a bad tooth pulled.

    I knew my amazing mother was going to be footing the bill, just as she has footed the bill for so much.  Without her support, we’d no longer be living on the Mountain in the place we’ve come to love so much, among many other things we’d no longer have. I don’t tell her often enough: Thank you, Mom. I’m so very grateful for all the support, financial as well as emotional, that you’ve given me through the long years. You’ve stood by me through thick and thin, and I couldn’t ask more a more loving and caring mother. I’m so thankful that you are my mother.

    Later in the day on Tuesday, as I tried to recover from the stress of the dental appointment, I got a phone call from my doctor’s office: the MRI results confirmed the SLAP tear the doctor suspected. This is one of the most difficult orthopedic issues to repair, involving things like surgery, anchors in bone, immobilization, and incredible amounts of physical therapy.  A close friend, who is a physical therapist, had warned me the PT would be months long, very, very difficult & very painful. Until the surgery and PT happens, the level of pain continues to grow. The cortisone shot helped for a month or maybe 6 weeks, but set off such a flare of issues that I hesitate to get another one.

    I fled my mother’s house in a state of deep despair after getting the news – I had to get out, get away, even if it was just a couple blocks to the nearest Micheal’s craft store. You, my lovely friends, have often told me that I have handled the many years of illness with grace & strength. But sometimes, there’s not so much… one thing piled on top of another in the last weeks brought me very low.

    As I wandered the store in a daze, my mother called to tell me she had rallied the family: with the birthday money my brother & sister-in-law had sent, and assistance from my eldest daughter, the laptop I’d been dreaming of & wishing for for many months was within reach. I had one already picked out, and had looked at it the day before. The Microcenter was next door to the Michael’s.

    As I came away from the store that night, my new laptop in hand, it was with a deep and enduring gratitude for my family.

    Recently, I’ve learned from dear friends who are also chronically ill of the difficulties they have with their families, who are not nearly as supportive or understanding as mine is: families who compare the complete and utter exhaustion of CFS to how tired they are after working in the garden; families where guilt is layered on the ill person so deeply that there’s no space for love & support; families where no one even believes the chronically ill person is ill, despite their struggling for years with the horrible, living death of CFS/FMS and other Neuro-Immune Diseases; and abusive spouses who seem to take pleasure in their pain.

    I’m really very lucky, and very, very blessed, to have all I have: the love & support of my family; the closeness I share with my spirit-sisters; and the mountains I call home. 

    So despite the tumultuous times of the past month or so, I end this post on a positive note, full of gratitude for all that I have, and trusting that no matter where the future leads, what ups and downs life throws at me, I will get through it.