Guest Post: How are you doing?

 

How are you doing? 

TLDR; I’m fine… I’m good 

I have been more aware lately when asked how I am doing. I often dislike that question as I know the expected answer is supposed to be something along the lines of, I am fine.  That is far from the correct answer, and it bothers me equally answering falsely as much as it bothers me when someone is asking me how I am doing and not actually caring how I am doing.  I believe that most people do not do this intentionally, just that it has become so habitual that it is part of who they are. 

I challenge you to either stop using that introductory phrase, or to immediately follow up with an affirmation that you really do care how someone is doing. Let them know that you have a few minutes and really do want to hear how they are doing, and how you can at least pray for them. If stopping to hear how someone is doing is out of your comfort zone, why not try being honest when you are having a really crappy day, week, month and briefly let people know. Say something like, thanks for asking, having a pretty bad time right now and definitely not doing fine. If they respond back with great to hear, or something affirming in the positive, it is not okay to slap them.  So, if that is your initial response, I suggest just not responding, most of the time people will not notice. 

So… How am I doing, you ask? I am not sure. I know that I am not doing great, like I have no care in the world, the future is clear and bright. My hopes, dreams, and desires are within reach, and my team (family, friends, partners) is healthy, wealthy, and wise. I know that I am not horrible as I could be holding on till someone says their goodbyes, or facing a major life cliff that will shake up my lifestyle to its core, or my team is not in the hospital where nurses and doctors are screaming and forcibly tapping them to get them to respond even a little. 

I certainly have had my fair share of great days and challenging days in the last year.  As a matter of fact, one year ago today I was on a very similar cruise going to Alaska, just like I am on now. It was a similar room, starting on the same day of the month, with a similar schedule, just a different year. It was our first cruise with a wheelchair. We discovered that I am capable enough to push/pull a chair through rough gravel, but we would prefer to never do that again. Turns out we were only the second people to complete the escorted trail in a wheelchair and did not require a rescue, since it opened years ago. That was certainly a proud moment to hear, after we finished the trail, but it does not change our desire to avoid it in the future. 

In so many ways that feels like a reflection of where I am today. I have a variety of accomplishments tied to Christy’s health that I am proud we have overcome so far. I stayed in the hospital with her for more than thirty days. I administered IV antibiotics at home after not being allowed to do so in the hospital, because of liability. I am managing to reasonably balance being available for her, work, and volunteer service. However, things are not easy, there are no major milestones to overcome, all is not well and statistically normal, and I remain in a state between not-great and not-horrible. 

So where does this leave me? I think the best way to explain is to describe the two sides of my thinking. I am certainly blessed and then some, but I am also certainly challenged and then some. 

In regard to challenges, over the last couple of years my wife has had increasingly more health challenges. Most recently with the detection of the brain tumor and subsequent removal of much of it, she has certainly continued down this health challenged path. In so many ways she has been a stellar example of overcoming hurdles, perseverance, and pleasant attitude despite the enduring hardships. However, our lives and her nature have changed, in some ways dramatically. 

Her momentary memory is shaky, and it is not uncommon for her to forget something that was said in the last minute or two. It is worse when there is more activity around her or if she is tired in any way, physically or mentally. I find myself repeating a question, answer, or information a lot more than before any of the brain surgeries. Sometimes it is because she is simply having trouble processing the information, and she needs more time, but other times it is because the information simply never stuck. It is like I never said it to her. This can be frustrating to both of us if we are working to make a decision, but it is often obviously scary for her. 

Most of us are not greatly self-aware. We do not realize when we get angry because of hunger, being tired, or over stimulated. However, we can often push through these situations and generally recover with a little rest and nourishment. More importantly we can often sense when we are heading towards one of these thresholds and make slight adjustments before we hit them. When we do hit them, our abilities might lessen slightly, but usually just with a bit more passionate engagement with the world around us. Christy, however, needs to be reminded to think about these limits, and when they happen it is more like a brick wall than a mere sticky situation. If you combine this with difficulty remembering, to eat, to think about eating, or resting, or anything really, it can become a brick wall quite unexpectedly. 

In a big way, Christy is aware that she has some physical limitations. Her vision remains doubled when both eyes are exposed, resulting in regular patching of one eye. This has effectively eliminated her ability to drive, at the moment, and as such I am pretty much her exclusive transport. We have done well at adjusting the days and times she needs driven, but it is not uncommon for her to have three appointments in a week. Some of those appointments are a couple of hours away in traffic and thus it can take a good part of my day to take her. All the while I am still expected to work my paying job that affords is both the insurance and the means to cover going. 

Those limits extend to her ability to walk for any reasonable length. Reduced walking mobility started a couple of years ago and combined with the vision issues, it only makes things worse. A manual wheelchair has not worked given she dislocates her shoulders and wrists when she self-pushes, validated a few too many times, so we have a powered one she can use when available. This is great, but you quickly become well aware of how inaccessible places are, especially those that claim to be wheelchair accessible. A closed door, blocked hallway, narrow gap, unexpected hole, or small bump can be all that prevents her from being able to actually use the chair by herself. She feels like a burden to ask for my assistance, but without it we cannot do some things. 

We have pushed through a few times, and she hits a point where it is like her ability to process the world around her ceases. She stares off into the distance, remains silent, and has little body movement. This is often while sitting and finally taking a break to rest. Resuming our activity outside of getting her to a place she can sleep is basically out of the question. At this stage she is unable to know if she is anything but sore and tired, there are no other decisions that are reasonable for her to make in this mode. In the future I suspect Christy will be able to identify when she might be heading towards this zombie zone, but for the foreseeable future I feel responsible for trying to prevent us entering it. 

I could ramble on about new issues with headaches from food interactions, random severe abdomen pain, unexplained pain in challenging regions, and the fact that she still has a fairly good size tumor remaining with “wait and see” as the official (and best) treatment plan. Not to mention that brain surgery recovery can take a good couple of years and is exhausting and so you have to limit your output on an ongoing basis, which limits your opportunities, which can limit your connection. 

But I won’t… instead let me share some of the blessings. 

Traumatic surprising medical news can have a variety of reactions. For me it once again served as a reminder that life is not guaranteed and to pursue and protect the things that matter most. I am often, and once again recently, reminded that the things that matter most to me are not new adventures, shiny toys, or some higher status achievement. Perhaps this is because despite me being only forty-seven, I have experienced, done, and accomplished more than most who live a lifetime. However, what I value most is the time and people around me. 

Sure, some of that translates to me wanting to splurge to spend more time and experience with those people, but overall I tend to enjoy some of the simpler aspects of those experiences than the more extravagant.  Christy’s limits have required me to slow down and appreciate even more some of the simpler things. Everything we do lately seems to take longer and require more attention, but it seems to return that effort in value for the time and effort spent. 

Christy has also needed me to be more complete in my thinking and speaking. This was annoying at first but has really forced me to understand and articulate what I think, feel, and want. I no longer can have her step in and sort of influence my thinking by completing my thoughts or decisions. She is so much more raw, real, and simple. What I see, hear, and experience is who she is to the best of her ability and awareness. This allows and requires me to be real and straightforward if I want our partnership to flow well. 

She has retained her ability to cook a meal, exponentially better than I. She still is the one to read and explain game rules to the group for a new game. Which is funny given she regularly forgets what she just said if she did not read it recently. Despite the challenges she faces I do not hear whining or complaining, just objective input to remain within her limits. I am no longer constantly worried about some critical symptoms that send us rushing to the emergency room, ready to utilize the ever present hospital go bag. 

I am starting to feel as if I actually have some room to breathe and process the last few months and last few years. To me they are very much related, with the last few months amplifying the concerns and trajectory we were accepting late last year. I take a very long time to truly process and become content with information and what it means, and honestly, until a couple of weeks ago I did not even start to feel comfortable taking time to really think about what we went through. Only a few times, but definitely a few times, I was worried I was about to lose Christy, either fatally or as a reasonably functioning human. Those concerns are not in my thinking now. And yeah, she has a tumor, it could grow, but for some reason I am generally accepting that and am working to understand the new baseline so we can be more aware of major changes, if they ever come. Perhaps it took forty years for the tumor to grow where it was, and perhaps it will take forty more to return to an annoying and intrusive state. Who knows? 

Through it all I have truly been blessed. 

• I remained relatively healthy despite the lack of good sleep, nutrition, or even direct daylight for multiple weeks. Sleep and nutrition were certainly challenged from February through June. 
• My employer changed to unlimited vacation effective around March and I have already passed what I would normally take in a year, and we still have a quarter left. 
• We had people step in when we really needed it, often without much prompting. It was truly interesting seeing who stepped in and who could not handle the gravity of the situation. We leveraged people many times and require assistance much less lately. 
• I truly wanted for very little, or at least for very long. We were greatly provided for in times of need, and often received special treats, and we had the provisions and resources to do what we needed, when we needed. 

So... How am I doing? Good, but not likely your good, but good that appreciates not being stuck in an ICU for weeks. Good in that we are celebrating living and not simply celebrating a life, mourning a loss like we witnessed this year numerous times. Good in that despite the many thousands of people laid off from my employer in the middle of our health opportunities, I still have a position, purpose, relevance, and health care. Good that I am strong enough to lift the seventy-five plus pound wheelchair my wife uses to get around in a world that is not wheelchair friendly. Good in that despite now being my wife’s full-time transport, I am able to resume serving at the local homeless mission in close to the same capacity I used to, and sometimes with my wife. Good in that we have resources to try old adventures that work, but not exactly as they used to, and not exactly as we fully hoped. Good in that I have tools to help manage my wife’s momentary memory challenges, and she trusts me enough to pass on some of her organizational needs to me. Good in that I seem to do well with six to seven hours of sleep, and yet still seem to not have enough time in the day. Good in that I did not have any recent health scares and can finally get around to getting the colonoscopy and full body skin scan that my doctor recommended. Good that I have people I matter to and check up on me, even though my interactions with them are effectively on pause while we figure out this new normal. 

God never promised our life would be easy, and perhaps John 16:33 best sums it up, … In this world you will have trouble…  Sadly, that might often be how we receive that verse and its intent, but like our life lately, that is not the whole story. 

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” 

So, take heart, and have peace! 

Michael