Speaking truth in this critical world is never easy.
Occasionally, I get an email or comment from some stranger that has read a blog post who will
tell me to quit whining, or that every one has problems or to "not quit my day job".
And, occasionally, I get an email or comment from someone that reminds me that speaking truth
in this critical world is necessary, however, it is rarely popular.
So, if it's okay with you...I'll keep writing about the uncomfortable topics in life. Just remember, you make the choice to come to this site and to read. Your participation is optional. My writing is not.
I have spent several months of the past year taking classes... business classes, coaching classes, personal development classes, writing workshops, nutritional classes. I've learned that I am a perpetual student. I have this deep inner drive to learn, to grow, to expand my mind, to see all I can and to soak up every detail. Through these learning experiences, I connect with people. I engage. I fully commit to each relationship. I see the face value of a person.. the surface, the first impression and I totally engage, lock in, relate, love, befriend and care for. Sometimes I see this as a blessing, other times its a curse.
I am now 9 months post op for my second brain surgery...and almost two years post op for the first one. After all of this time, when I weigh the painful times, the dizzy times, the hearing loss, the speech issues, and currently-the vision problems that alter my activities on a daily basis, I can honestly say the worst part has been the isolation.
Being separated from activities and people has been the hardest part. While yes, I've been in multiple classes and know many people. Chiari is a very isolating condition. Initially, people are involved..but over time, these same well-intending people fall by the wayside. The expectation is that Chiari surgery is like any other... you get diagnosed, go under the knife, take a few weeks to recover and you're good to go. Now, wouldn't that be nice?
On the contrary, that's not what happens. What happens is that some symptoms are relieved, some are not, some symptoms worsen, some disappear completely and some new ones arise. So every day is a new day. One of my dear friends developed nerve damage after her surgery that was causing worse pain than she had before, so she then needed a second surgery to relieve the nerve damage. Yet another friend developed a post op infection that has eroded her skull, so now she lives in danger every day. Yet another now wears a brace for even the of shortest car rides, without it the pain is unbearable. For me? My surprise takeaway from surgery is my vision... or the lack thereof.
Much of my isolation comes from this rather than pain. I'm thankful for the lack of pain. However, I am very social and thrive on relationships. Now, I find myself often frustrated and even angry that I can't participate in my life like I did before. Let me explain. I am limited in the distance I can drive by myself...and I know I better drive early in the day before my neuro system fatigues. AND- I'm a better driver when not in traffic. (and I live in Dallas-so good luck with that!) Just yesterday, my son flew up to Dallas for a few hours. I drove to the airport, took him to pick up his new car, had lunch, then went to Whole Foods. I was in heavy traffic part of the time--very visually stimulating. However, I actually felt pretty good. Not really tired at all. So after I'm at Whole Foods for about 30 minutes, my eyes started to have this weird feeling that I always know means..."Hey, we're about to be done for the day, so we hope you aren't driving." But, of course, I was driving.
I stopped my shopping immediately and went to check out. Thank Goodness! No Line! But by the time I got finished checking out.. I couldn't see the numbers on the pin pad to put in my debit card PIN. And I was in Arlington, 35 minutes from home. I got in my car, and drove very slowly and cautiously home. Traffic was light, yet it still took about 55 minutes to get home. I walked, found the bed and collapsed. A heard few text messages had come in my phone. I looked at them, but couldn't read them and the light from the phone was harsh. My eyes burned and the double vision was exhausting. I closed my eyes and mentally checked out for a little while. Visually, my day was over.
Now I don't say all of this for pity or as an excuse for not showing up for life sometimes. I guess I just feel that someone else has to relate to this. I back out of many things because I know I can't do them alone. Like, driving to Waco, where my son lives. I just don't go that far anymore without someone with me. I can't trust that I will get safely home. My doctors have no explanation and can't determine how to help. I even feel guilty for complaining about it because in my mind I think it could be so much worse. I could be in great pain every day like many people with Chiari. I'm one of the lucky ones.
Fortunately, I am able to go and do many other things. I can hop on a plane and travel. I am seeing the world in a whole different way now. I can use Uber when driving is precarious. I can Skype with clients and business colleagues. However, what I really miss, what I lack...close personal relationships with people I can see, touch, hug.
I wonder how many people feel this way? Do you feel isolated? How do you cope? As you see others living their lives without you...as if you were never part of their world...do you wonder if they even notice?
I'm in many Facebook groups...and I see many bitter and upset people. I try to not engage in much discussion because it seems so many of us are so angry. I see bullying by some people and I see others taking advantage, using false fundraisers even a few drug seekers. Is it the isolation that causes the bitterness? Is it anger?
So, you can see where a super social person like myself has trouble with isolation. In my world, things have changed. Living with the ups and downs of Chiari combined with an emotionally paralyzing family trauma, my innate desire for relationships and personal connection has become quite problematic. Isolation is not my friend...but has become my constant companion.
True to my nature..I speak my truth. I reach out to people and say I miss them OR I get upset with them for not reaching out to me.. or to us. I am not afraid to say what I need or that I'm hurt or disappointed... or all of the above. I have learned though to speak it and leave it. Responses are rarely curative and most often hurtful.
So, the cure for feeling isolated? Perhaps there isn't one. I now believe that people come and go in our lives for a season. They aren't all meant to stay. It's nothing personal. It just is. Accept them as pilgrims on the same journey. The few that stay, they are the blessing. Love them. Cherish them. Celebrate having them every day.