Fears and Doubts and Guilt

Friday April 13, 2012

Yes, I’m not ready. No, I am ready. (Who’s playing first. What’s on first? What’s on second. I don’t know. He’s on third.)

I’m so confused. I wrote in my journal earlier this week and I am just sitting on it, still tweaking before I send it live on this Grief Reflection blog. But I can’t seem to post it and I have felt emotionally spent ever since. So of course I ask myself “why?” And here I am writing about writing it out.

The famous “how are you doing?” question arises again. It‘s a natural and honest request. Caring people want to know. However, my answer is complicated once more. When people ask I assume they are thinking about me and Dave. When I answer I am thinking about me and my health.

Earlier this week (not posted) I wrote about wrapping up my grief on Dave’s death (as if it were a package). I’m not finished; I’m just being very OK and getting around day-by-day, thinking I can look to my future in a positive light and get back to work helping others after their loss. I can. I believe it. I am ready. I have worked so hard through my grief for 18 months now. I am comfortable in my widowhood skin (although not so much with this word or label). I know what to do and how to care for my singular self. (I don’t necessarily like it.)

I am taking a break, I declared to myself and my audience, to focus on me and my health. (Most interesting is that the post was more audience focused rather than personally reflective as this note is going now.) From the outside in, I am in grief and mourning my husband. In reality, on the inside, I am experiencing a new loss, this time even more personal and equally profound. It has stopped me in my tracks. It gives rise to fears and doubts and guilt. All the feelings one would expect me to have in response to Dave’s death are, at this time, now about me.

If I were in an employee in a 9 to 5 job, I’d be on leave. Not for bereavement now, but for disability. That’s some of the guilt. Have I grieved properly enough? The “shoulds” of loss are mine to fuss over, regardless, or maybe because of, what I project others might think is best, right or normal. I can shoo this guilt away pretty easily, but it is enough to find its way into my head. I am reminded that “the length of time one grieves is not proportional to the love one feels.” (Dr. Phil).

If I were in a 9 to 5 job I would have a feeling of guilt for seemingly (to me) having to abandon my work and thus, I suppose, let down someone somewhere.

But I can’t leave a job that is my life. And my life that is also a job. I can’t leave a sole proprietorship, and entrepreneurial endeavor, hanging. Or, can I? Or, how do I? I have kept my business in maintenance mode for so very long now. I’ve waited on me to be far enough along my journey (whatever or wherever that is) that I  can keep in check all that grief does to touch us personally and professionally. I’ve come far enough that I am itching to create again – in writing curriculum and life design and inspiration. Yes, I’m.. not ready. No, I am ready. How can that be?

My unposted journal pointed out what I already offer in my business and how I will be doing more writing and reflecting there via Storybooks for Healing in the coming months, as I simultaneously retreat to care for myself. But this was the showstopper to uploading my words. I am in no position to be making promises to others. I can’t keep up with my desires no matter how enticing in this moment. I see the business path I want to jump back onto, I am just not able to get my feet on the ground yet and give it the support it deserves. Here is a detour, once again, and I am pissed off.

SCDS. Semi-circular Superior Canal Dehiscence Syndrome. This rare inner ear/disequilibrium disease has changed my life. My ability to function consistently and predictably is gone. In December my symptoms began to interfere with me noticeably and daily. (SCDS is one of the invisible diseases that others can’t really see manifested like a broken leg, but for the sufferer it can be personally debilitating.) After a recent flight on which the plane vibrated during the entire flight, I am sure it shook larger holes in my head. Everything, maybe I should say every sound, has been even more magnified since then. My eyes, ears and balance are out of alignment. It takes a huge amount of energy to physically coordinate what most of us normally take for granted – walking, talking, thinking, visual focus, tuning out noise. (I’m sure there is a parallel with grief in here somewhere.) One of the most difficult aspects for me is the brain fog, the inability to remember and concentrate (feelings are easier than memory and academic subjects, thus writing is a real support, but spelling and typing are extra effort). Reduced to a lot of resting and down time, I am sometimes feeling a bit Looney-Tunes crazy. I can hear my eyeballs move. I can feel every step I hear resonate in my head. With dizziness, comes nausea and heartburn. There is white noise tinnitus 24/7 and pulsatile tinnitus whooshing when I lay down. Sometimes things look like they come to life as my vision makes them jump with my pulse, but at least I find that funny. From a clinical standpoint, SCDS is fascinating.

I’m mad that I can’t progress in life in the direction I can see ahead. I’m frustrated that I can’t fulfill promises I want to make. Or that I can’t even make promises because I realistically can’t be available to fulfill them. I want to yell at the Universe for bringing me some unfair disease that I have no control over at a really bad time (not that any time would be desirable). I wonder why I can’t just be allowed to free myself from this disease now. Or better, never even have it in the first place.

So, if anger is a mask for fear then here it is. My fears and doubts list:

  • Surgery. When you start looking forward to someone drilling into your head and pouring cement into a hole, then you know it’s a real worry. Surgery will be scheduled for late May of June. Eek.
  • Have I waited too long and created more damage? It is important to be ready, and worth the risk.
  • Will it be successful (will I return to full normal function)? Since I am bilateral will symptoms still be disabling on the side not repaired? Will I have to have a second surgery? If so, when? How will that affect me, my independence, my business?
  • How long will recovery take in rehabilitating my balance and other current symptoms?
  • Am I handling Dave’s death in its entirety? Am I accidentally or necessarily postponing some of the grief process in the priority to take care of myself? (Will active grief come back to haunt me? Am I really OK?)
  • Will my business survive this time I take for myself? It can’t survive if I don’t take care of myself. (I doubt the world will run out of grief anytime soon! And what’s a couple more months now anyway?)
  • Can I really care for myself with this disease? Am I alone? Am I really sick, disabled, or physically challenged? (none of those words seem accurate or comforting.)
  • Can I change something like diet, exercise, other habits that make a difference? The short answer is no, only for some minor symptom relief rather than a fix. (This is the Did I bring this on myself? question)
  • To truly care for myself means withdrawing right now, saying no. How will that be interpreted? Can I do that? Can I balance yes and no? Am I giving up or giving in?
  • Must I question everything (she says laughing aloud!)?

Earlier this week I wrote with a nod toward what I want my world to be: handling my grief with grace and reality, taking care of myself and giving due attention to business I can’t wait to be fully present for. It was (and still is) a real moment of confidence and calm. Yet, buried inside there was something that didn’t ring true to me and kept tugging at my completing the task to post. In its irony, these moments make me happy and excited because I live what I know to be true for overcoming loss. I have stopped to listen to myself, I give my grief – whether over Dave’s death or my illness – its own time and space and voice. I do this through writing and questioning and answering. It really does work as it is supposed to do. I prove it over and over again.

The bottom line here is that I will be OK. I have to stay in the moment and continue to feel as I do. I do have to withdraw and allow this time to float by. Some days are simply better than others. My angst, or even joy, may be about Dave’s death, my disease or any of the exciting and challenging aspect of entrepreneurial life. My journey continues. I am not alone, yet this is for me to work through alone.

Until this juncture in my life I have often visualize a path that splits into many different directions with choices to make on which way to go: it’s the Fork in the Road analogy. Strangely, I have come to a time that feels like I have been on many paths and they are converging to make a single walk into my future. Some roads are already merged. There are a few left to bring in. That’s my job for now.

8 replies
  1. susan : SCD fellow
    susan : SCD fellow says:

    The first on your list of fears is surgery and that when you “start looking forward” to having someone drill a hole in your skull you know it is a worry. Maybe rather than a worry it is evidence you are getting ready. That a shift is occurring between the familiar difficulties of SCDS symptoms and your declining quality and quantity of life and the unfamiliar benefits of surgery. Your important questions about time and outcomes and “success” have variable answers among SCD patients. Have you asked them of a reputable surgeon, who could help you find answers to the medical probabilities and risks of post-operative responses? If you are careworn from the demands of life then thinking that a craniotomy could offer relief may be wise rather than worrisome.

    • joan
      joan says:

      I agree, Susan, that this is evidence of preparation. “Worry” is more meant that the symptoms make my radar in a significant way. I have my list of questions in hand for my upcoming meeting with the surgeon. I am grateful for the SCDS online support groups to assist me through their experiences as well. (and is it safe to assume you are our invaluable Susan L.A on these forums?!) Grief, as well as facing major life changes benefit from knowing others in the same stream. Thanks for commenting.

      • susan
        susan says:

        I am just 3 weeks on the “other side” of the SDS surgery so my energy for writing, being on the computer etc is only slowly increasing. Hence, the delay in reply. But, I have no regrets for electing the procedure.

        I did not mean to diminish your concerns about what the surgery may mean for your health, business, and well-being. Merely that if you realize it is time for the surgery then I hope you can face it with few worries. In my opinion, one way to reduce worry is to be informed. Some questions for your surgeon: will I need to be on steroids afterward and for how long? Will I need vestibular therapy, is it available (inpatient or outpatient) and how do I access it? Do you anticipate the canal will be dis-functional after the surgery? May I have a private or semi-private room (quiet and dark are important!)? Will I need a catheter and for how long? What foods do you anticipate I will be able to eat (soft) and which do you recommend (for healing).

        I am not the Susan of the SCDS forum, although I did browse it for information and to find a few fellow SCD folk on the US Pacific coast of whom I could ask questions in private. They were –to a person– supportive and informative. It is indeed a community, albeit one we never wished to join. One very useful suggestion I got and never thought to ask was to request no hospital visitors the first 24 hours. You will of course want and need support as you heal, but the first night rest, sleep, and as little stimulation as possible is vital. If you have questions please feel free to ask. I will be here before and after.

        • joan
          joan says:

          Hi Susan.

          I wish you the best and a speedy recovery of health you’ve known before. I have a sense that this surgery has a longer recovery than the doctors tend to suggest, just by all I read.

          There are probably as many clubs we don’t want to join as do. Mostly I am appreciative that there are others who come before me to help and that I can follow up by lending my support and lessons learned. I will include your questions to my list for the surgeon. If you don’t mind, I’d like to connect offline since you’ve extended your support.

          Many thanks for your comments. ~Joan

  2. susan
    susan says:

    recovery is individual but, in my estimation months– not weeks– is probable to expect. Before my surgery I read the scientific literature (observations of surgeons) and the SCDS forum (perspectives from patients). The variation therein only underscored my opinion that the process is non-linear and unpredictable. Does that matter? It depends on how much certainty you require in life and how poorly you feel in comparison to the risks of surgery. You may connect directly to me at my email {edited for privacy}. I will try to respond quickly but am only just now starting to able to be on a computer and even then for 1hr. The phone is difficult and even more tiring. Another question for your surgeon: will someone (and who?) call or follow-up after you are discharged from the hospital? Plan to have an advocate with you at discharge who knows exactly what all the medications/doses/desired & prohibited activities are. You will be too woozy to hear or heed and it is critical information. I am here, if slow. best of wishes to you.


Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.