**This is a repost of a blog I originally wrote 2/13/2011, so I will remove its original location and move the post.**
For many months now I have wanted to write this blog. But it will be long, I hate thinking about the situation because it's haunted me daily for a year, and no doubt I'll have a bunch of seizures while writing this. That means writing it in a .doc over many days, after which come more days of editing between seizures. So I've been putting it off for physical reasons but honestly the emotional hurt is even more difficult.
I can't believe a year has gone by, yet I am not the least bit closer to understanding any of it.(If you continue and become lost, best just stop reading, as you are not involved in the situation and I don't want to involve you unnecessarily.) In December 2009 it was announced in our home group that church was going to hold Alpha course again. It hadn't been offered for some time, since before a local church disbanded and many of the members joined us, so it was a logical decision as many would likely want to take it. While meeting at our house one week, our home group leader said that whatever night of the week Alpha was on, it would be in place of group each week. The class lasts around 3 months.
I had a few concerns and shared them with DH (web-speak for "Dear Husband") first. It's pretty well known I have trust issues, so speaking with DH first would not surprise anyone. At one point even the home group leader said that given my past, it's surprising I trust anyone at all. I trusted her and that meant a lot. Not all of my issues are trust though, some of it is being self-conscious and feeling like a failure, because none of these people know me from before I got sick. I was a typical type-A personality, total over-achiever, graduated high school in two years, did two undergrad degrees at the same time, and completed a 4-year Master's program in 2 years, receiving it the day after getting out of the hospital from delivering my first baby, having done night classes after teaching middle school by day, reaching tenure by early 20s. But I shared with DH that 1) I was still extremely self-conscious about all the complex-partial seizures I had every night, including during weekly home group. During one group, people were kidding around and one of the guys made the comment, "Hey K gets to sleep at home group, why can't I miss things too?" I was stunned speechless. There are some pretty big differences between sleeping and seizures. My brain is full of scar tissue from arachnoiditis, the result of a 9 month bout of meningitis; the scar tissue grows 24/7 and is progressive, it will always grow, continuing to tangle up my brain, disrupting processes along the way. He added reason #5320 I have problems trusting people, even the ones who are supposed to be friends. I also told my DH that 2) I have taken the class multiple times and have also assisted our pastor with it. 3) We wouldn't be able to afford a baby-sitter. Having home group at our home was a blessing, a) as our kids were the youngest of anyone's in the group, so they could get to bed on time, and 4) with the seizures I was in my home with Shelby to alert, a cabinet stocked full of meds I didn't need to pack up, and only a few people had to see the seizures. Alpha was offered to the entire church, scheduled at a huge room at the local community college. I could not get the nightmarish visions out of my head, the entire church watching me having complex partials and tonic-clonics, drooling, waving my hands around, instead of them concentrating on Alpha, wondering WTH was wrong with me, or like P did, thinking I was sleeping off and on every home group, and c) when I have seizures at home I have a safe place, unlike a community room 5) Gas money. We have none. Our two credit cards, which were for emergencies only, are now about maxxed out because the woman who ran over DH, her insurance has not reimbursed us yet for the ton of medical bills we had to pay to keep out of collections. 6) Too physically difficult to get ready.
At home, it's easier to hide that I don't get dressed most days because it's so difficult. Ever had a hard time dressing? Showering? What if you couldn't shower but every couple weeks? Try it. Let me know how you feel about yourself. I am guessing no healthy reader is going to take me up on my offer, but, I'll hope. Maybe someone will surprise me, like on that TV show 30 Days.
Toward the end of the year, two weeks before Alpha began, Home Group did their first house rotation since we joined them. It's normal to swap houses among group members every couple months, or quarterly, or whatever is decided. The two meetings were to be at J's house, which would have been great, but the swap was done toward the end of December, a notoriously crazy time at school as it brings the end of the quarter. Both of the kids had activities during both of those weeks: a performance and a parent conference.
When I wrote the home group leader to let her know about the scheduling problems, since I wasn't ever sure where she was going to check her email, I sent the emails to both her work as well as her home address, same as I always did, though I always was afraid I annoyed her with my double sets of emails. But I figured it was better safe than sorry and be sure I reach her. I emailed her about both those events and apologized that we couldn't come to Home Group; I also included a prayer request both times. There were patients I was neuro-advocating for that were going into surgery shortly, and so it was very important to me that the Group pray for them and for their families. I'd been helping them from the time they were still trying to get a diagnosis, got them doctors, other help, fought for their SSDI, and now helping them through their surgery and recovery journey. It was a huge step.
And so, we were unable to attend Group at J's house either of those 2 weeks. We didn't think it was an issue, as everyone in Group were parents of younger kids, except one very sweet older lady. All with kids still in school missed at some point due to a school activity. It's understood.
I was, however, told it was a problem to not take Alpha again. It was said my choice to not take Alpha with home group meant I obviously no longer wanted to participate in Group any longer. It came out of nowhere, and was devastating. I could not get it understood that my choice to not repeat Alpha a 3rd time had nothing to do with the reasons she was telling me, but instead was almost entirely health-related. Yet all that was repeated to me was that I apparently didn't want to be part of Home Group any more because if I did, I would participate in the class with Group.
I was incredibly floored and so hurt, and it left me shocked, feeling I had no one to turn to, and I had to get it out of my system. I came here to this blog, which has served as my journal since early 2004. It was when I was finally diagnosed, and has seen me through nearly two dozen surgeries, learning to speak, walk, and write again--and the loss of some things once again after progression. I can't physically write much any more. The Ehlers-Danlos has great impact on my wrists, hands, and every joint in my fingers. I often can't write down more than a couple items to add to a grocery list, so this website has been a shoulder for me to cry on in my hurt for years now; it is no different as any diary constructed of paper and pen. And in my hurt feelings, lack of sleep, seizures, and pain meds taken in the futile attempt to bring pain down a little, it entered my mind for a moment about the possibility of finding another church. What was I supposed to think, after being TOLD I must not want to be part of the church family I'd been with for SIX years, just for not being able to take a class with them for so many health reasons? We were not talking about sniffles here.
Months later while talking with another friend from the church but from a different group, I was surprised to find out she didn't take the class either, because she already had in the past. Most of her group didn't take it either for the same reason, and none of them had been in any hot water for it. Apparently the class was not assigned as a home group project. Many other groups were still meeting while the class went on; it was not a group replacement as it was for mine. DH and I were effectively kicked out of group, and felt unwelcome at church because our home group leader's position at the church had me believe that her word was the truth for the church as well.
We never found another church because we never bothered to try. We spent 6 years of our lives with this church family so after this open wound, we had no desire to go elsewhere in fear of this happening again, of having salt poured on it. Running does no good. People are the same everywhere. In the late spring I spoke with J again, whom I had considered a friend as well as fellow home group member. It was during this conversation when I learned the group leader told everyone several months back we had decided to leave the church because I mentioned it one time on this blog, but she told them that we had done so way back in December, before Alpha even had a chance to begin, before home group changed from our house to J's. J shared they were told that we took off before ever even going to her house for Home Group the two weeks before Alpha. It sounded like J had been living with hurt feelings those few months before I called, due to the home group leader's actions.
My jaw hit the floor. When we got off the phone I cried. I could not believe that all those months, J had been under the impression that DH and I chose to leave immediately after meeting at our house and that's why we never came to her house for the two weeks Home Group met at her house before Alpha started. I shared with her about the duplicate emails sent to group leader's work and home for both weeks, how we were at our children's school activities two weeks in a row, and how we sent greetings to everyone and prayer requests both times. The group members had not been informed of any of that information. It really felt like a kick in the head. I don't understand why that was done to us. Now we have not seen the others in Group for over a year, because they think we "took off" and abandoned them.
Toward the beginning of our conversation I asked J why no one ever let us know the day and time of Home Group so we could start attending after Alpha was over. She said that my blog awhile back had said we'd thought about finding a different church, so obviously we made up our minds. That really bothered me. I reminded her that this blog, like I shared earlier, is my journal, a diary. In an upset--and extremely hurt-- mood I put down some time ago that maybe we ought to look for another church. But did we? No. It was something I wrote down to get out of my system, in the middle of a lot of other things going on as well that also impacted me. Know what? Eight or nine years ago, desperate for sleep, I told DH if he didn't see a doctor about his apnea, I was going to cauterize his tonsils myself with a soldering iron while he snored. Did I actually do it? No! But I felt better once it was out of my system just having said it. I didn't even know anybody had read my blog! Nobody ever said anything. No one acknowledged reading about my innermost thoughts and fears, not even at home group; when it was asked if anyone had anything to say, and I always kept quiet and they knew why I was afraid to talk to others but knew I needed to because of serious problems going on, they remained silent. What if all of us were at home group and one of the others, let's say M, shared the thought briefly crossed her mind to look for another church because she was frustrated. I can guarantee the group leader would NOT keep quiet and just let M walk out the door. So don't say a word as you go open the door for K, just give her a kick in the ass on her way out.
Let's forget about that I've lost count of all the people over my 6 years there who discussed changing churches because of their frustration, hurt feelings, or downright anger. They would bring it up to their home group that maybe a church swap would fix things. Nobody got the boot. Lo and behold, their home group family--yes, home groups are supposed to be FAMILY, at least they are supposed to be--would ask why they were thinking about changing, what was troubling them, and how they could help. Nobody, until DH and I anyway, have been shown the door without so much as a word.
We get the point, we aren't missed, we get it. I picked up on that a long time ago, but DH was holding on. When I was unable to go, he would come home afterward and tell me who came up to him after service, ask about me, and ask what they could do to help. Every time, for over a year, he always said, "She's home, just an email or a call, that would really make her day!" And they all would say they would either come on by for a few minutes on their way home, because hey they're free for the morning anyway, right? or they'd "definitely" call or email soon.
Do you know how many of those people followed through? None. Zilch. DH would rush home and say, "* said they're swinging by in a few minutes, I've got to straighten up real quick!" and he'd rush around tidying. For nothing. I'd use up my energy and spoons for the week help with what I could. For nothing.
It used to bother me, how no one showed up, how I forced myself to stay awake because someone was coming over. Every time it happened, I became smaller. My self-worth, my esteem, my self-confidence, all the time, smaller.
But you know what bothers me now? It's not them. It's something DH said not too long ago that ripped my heart out. "I'm sorry I kept going for so long, and gave you false hope."
After 23 surgeries the last few years I've come to the conclusion those of us diagnosed with serious illness do not belong anywhere. We're the bastards of society, of groups that don't really want them. They pretend to for a little while, but they really don't. We get that pity stare, the pity hug, then we slowly get pushed away. And we feel every...single...fucking...inch. Got that? Good. Don't forget it. Forget me. It's fine. But don't forget that. If the woman at Oasis who admitted to me she never called or came by because she couldn't handle seeing what my illness is doing to me, if you are reading this: we NEVER get to stop seeing what it is doing to us. But hey, as long as YOU get to have an easier time with it! I have thought about that comment every damn day and sleepless night since you said it, but I wonder if it has even entered your mind again?
The church best deals with people with short-term issues like non-life-threatening surgery or a baby delivery. My friend Tammie says it best, that people like to do something quick and easy, like deliver a meal, be done with it, and pat themselves on the back for having made a difference. What to do about the person whose spine, brain, joints, and organs are slowly rotting away? It poses a much different challenge when someone is in surgery every couple months.
The pastor teaches a class through the church, and it says that if a member is in the hospital for 2 days or more, they should be visited. You should sit down so you seem comfortable, not standing because then you will seem nervous. Hmm. I'll give the benefit of the doubt: 16 of my surgeries have been local (the rest out of town and/or state) and I've seen him once, the time I had to have him called to get him to come and it was so quick a visit he stood aloft only briefly, speaking of the superficial. How about all the other times? If he could not visit, how about a call? I have spent weeks in hospitals crying myself to sleep at night, afraid and alone.
Where has everyone been for DH? Who has been there to comfort him, especially at the really bad times? It was the hospital's chaplain who stayed by his side, DH having been told I would not make it through the 12 hour shift, not after DH and my mother witnessed me having CPR following one of two cardiac arrests that left me on a ventilator, unresponsive, unable to breathe on my own.
I have learned life is a series of battles, every single day: a battle to stay alive, to get appropriate care, to be taken seriously as a woman using a wheelchair, to have it understood that I have a disability, I am not a disability.
A friend who is a church member--a person who left for quite some time though eventually returned-- suggested to the pastor that we need a home ministry to check on and help the home-bound. He agreed and told the person to go for it and sent her on her way. The person didn't feel any support was offered, just told to go do it, and thus she was unable to continue. It couldn't be done solo while working a job and caring for children. I completely understood her point of view. So many people that were members when we joined, or came around the same time we did, have left. I emailed all of them to see if they were ok and if there was anything I could do, but I couldn't keep up with it on my own. Many were grateful just to hear from someone. Some returned because of it. How many others would have returned if people would reach out and show they care, instead of just letting people disappear? There is a serious problem here and I hope it will not continue to be swept under a rug. A whole being, once full of hope, seems to be drifting away, but sadly too many have already scattered the wind and it seems an issue no one is willing to truly acknowledge and deal with.
And so, DH and I continue on with our lives, feeling unwelcome and unloved, wondering if her actions as a home group leader were representative of the church and how they really feel about us. It's painful, painful.
It's 6:47 a.m., I'm still away, unable to sleep. Time to at least let the body rest even if my mind cannot.