Wheelerswife

Sigh. My heart hurts. I did spend some time this week and went through every single one of my 2500+ posts and copied what felt important to Word documents, but still, the loss feels enormous. It is like books and photos went up in a bonfire. All of those contributions of wisdom and support...no longer retrievable. Sometimes it was the shortest little response that made all of the difference in the moment. The closing of the board has taught me some lessons, though. For one, it isn't just what you say, it is how you say it. How they did this...just wasn't good - or good enough. We deserved more...more explanation, more time to digest, more time to reminisce. Maureen

My first husband had a rare genetic disease (Spinal Muscular Atrophy) which eventually caused him to have chronic respiratory failure, which set in motion a cascade of critical scenarios when he became acutely sick. I knew of options for my husband that most critical care physicians and pulmonologists we unaware of, as they pertained to a small segment of the population. We had recently consulted with a ventilatory management specialist. Trying to get doctors to communicate with an "ultra-specialist" of sorts was a nightmare. I was the only one holding onto hope for my husband, when the doctors, nurses and respiratory therapists were telling me to be realistic. I finally asked to talk to the whole group at once. They gathered several people together and I told them to stop telling me to be realistic. I WAS realistic and I knew that a host of things could kill him at any moment, but meanwhile, he was alive and we were going to hold onto hope that he could pull through and I told them what our goals for survival were. Eventually, I put my foot down and made them airlift him to a hospital out-of-state where this expert practiced. That physician and his team were able to pull my husband through and we got another 16 months together. We were in the local large teaching hospital/trauma center's ICU two more times (it is where my husband died) and I got a lot more respect for my fighting spirit once they realized that I actually had valuable input into my husband's management. As a matter of fact, the doctors didn't want to admit my husband for his last hospitalization because they didn't think he was sick enough. I insisted...and insisted further that he be put in a step-down ICU bed. A few hours later, he went critical. The docs were glad they had "given in" to me. My husband, after becoming so critically sick again, made the decision to pass on more aggressive care at this point. He died within a week. I guess my point is we need to be advocates for ourselves, but we also have to put our care into the hands of fallible people. It is a tricky balance, and I feel for people who don't have the capacity to advocate, question those in "authority" of sorts, and may be left to the care of those who may not make the best decisions for that individual. Maureen

As someone who is coping with cancer personally and who has worked in health care for 26 years, I HAVE to keep my hope in the people who are watching after me. I know that some bright and experienced health care providers don't have the best bedside manner, and perhaps that distance keeps them able to cope daily with the constant stream of loss that happens in medical careers that deal with some of the sickest patients who are living with a death sentence. I don't know...but somewhere, somehow, I have to believe that there are reasonable explanations behind the behavior of medical professionals that don't necessarily get it right with their patients. I met a lot of doctors in my career. Some I liked, and some I didn't. My own oncologist has gone the distance to develop rapport with me, has listened to my arguments about treatment, has taken my case to the team of sarcoma specialists and discussed my viewpoints with that team, only to have the team agree with my plan. Some day, it may be this oncologist who has to break the news to me that there are metastases/recurrences. Right now, she is hopeful. She's never lied to me. I know how aggressive my tumor was. I know the statistics and I understand what the statistics mean (and what they don't mean.) She has talked with me about how to try to live knowing what I know. Life is short and unpredictable and I have clearly had enough experience to know that. I hope I never have to deal with treatment that makes me ill and vulnerable. If that time comes, I will ask pointed questions and I will advocate for my own interests. In the mean time, I'm trying to figure out how to live and find meaning in my loss-filled life. Maureen

Old colleague of mine, Isn't it interesting that in our careers, we make lots of decisions that impact the health and wellness of the hundreds of patients we have treated, yet we struggle so much over decisions that impact our own lives? So many decisions and things we have to do are such triggers that we end up paralyzed, unable to stand on our own two feet because of the weight of the emotional toll that death has over us. If we only could have daily therapy sessions to coax us through what seems impossible...a strong therapist to pull us to our feet while we grasp parallel bars, a therapist so confident that we will be able to achieve our goals that the therapist lightens up the support and proves to us that we can stand with less support than we realize. If only it was that easy. It isn't. Grief leaves us so vulnerable that a broken mailbox and bald tires overwhelm us. Soon, the snow will melt and the ground will soften and replacing the mailbox won't be quite as difficult, but you might need a back brace to get things like this done for awhile longer. I know I need one, and sometimes, I need someone with a belt around my waist, holding onto me, just in case my legs give out and I burst into tears. Hugs, D. I'm sorry you are having to cope with all of this pain. Maureen

I just needed to say...it is so wonderful that you are back, A Tout Jamais. Maureen

As someone who recoupled and remarried fairly early out (18 months), I can only say that my grief did not "resolve" with getting married. It was always there. Somehow, it worked for me and with John to be in relationship, a relationship that was comfortable enough to allow grief to be experienced in its fullness. I understand that perhaps that isn't the case in many other relationships. For example, I moved into (and still live in) the home where my second husband lived for 12 years with his DW. There were constant triggers for him in this home. I remember the day, three months before he died, when we were about to embark on a plan for major landscaping in our yard. The landscapers had brought a large tractor into our yard, with plans to scrape every bit of the back yard down to dirt the next day. John went outside and stood there, looking at the places where his DW used to garden, at the old shed they had rebuilt together, at the places she used to toss the ball for her dear dog...and he cried...as more of his memories with her were going to be wiped away with the changes we had planned. We were ready ourselves to take more steps forward for our lives, but that did not take away our grief. Maybe some people equate recoupling with grief resolution, but from my experience with other recoupled widow friends, I don't find this to be true. Maureen

I've been to a few bagos over the years....just a few. I was just trying to list the places where I've had the wonderful opportunity to meet many of us. The list gets long...22 states - Maine, New Hampshire, Vermont, Massachusetts, Connecticut, Rhode Island, New York, New Jersey, Pennsylvania, Ohio, North Carolina, Tennessee,, Missouri, Nebraska, Iowa, Kansas, Illinois, Minnesota, Michigan, Colorado, Texas and California. (Did I miss any?) I've also attended bagos in Canada and Australia. While all are memorable, my heart lies particularly close to the group in the New England area, my original bago crew based in Connecticut that I met at 6 weeks out and all of those who have joined us there in the last 5 1/2 years. It was this group that was with me the day John, my second husband, died unexpectedly. True friends...who took me into their home, friends who came back the next day to sit with me when I was in that stunned state, trying to comprehend that John was DEAD! There are other bagos that stand out...that first DFW bago - my first big weekend bago in early 2011 - and the Wichita bago just before my first oncology appointment about a year ago where folks came just to be there for me. And then there were the widow weddings...I could keep going...because there are also those 1:1 visits and overnight stays that I hold very dear as well, but it would take a dissertation to give them all the attention they deserve. So...any of you who are new to this idea of bagos...nobody has ever bitten me at a bago and we never lost anyone...except @candib, but we located her and sent a search party for her! So, whether you are more reserved and would prefer to meet in a small group, or if you like big parties, find a way to connect with people near you or very far from you in the best way for you. I don't think you will regret it. Maureen

4 months ago...this was my post on YWBB: Ramblings?. at 10 months out. I still have feelings of intense anger at times. Anger is something I never had after my first husband?s death over 5 years ago. Perhaps there was some level of acceptance of the inevitable with his death, and the anger played out in bits and pieces throughout the 18+ years we had together. Barry?s condition was genetic and he?d never lived a day without it, but he?d had to fight discrimination in such areas as accessibility all of his life and we fought back in constructive ways together throughout our marriage. We both knew the prognosis for his disease, which he long outlived. We were able to have a pretty darned good life in spite of all he faced. We?d watched others die of complications of his disease at younger ages. We knew what was coming. Life had always been unfair, really. But when he died, he had squeaked out every bit that he could from the hand of cards he had been dealt. When he died, I dropped into a pit of sadness immediately. He was really gone. John entered my life months later, also saddened by the loss of his wife Cheryl. He wasn?t harboring anger, either. We brought each other along the path of grief over the time we were together. One thing we did shortly after I moved here was to renovate the 2 bedrooms in this little house. We bought a print of an autumn forest scene in with a dirt road that curved into the distance. In the foreground, tall trees shadow the road, but the road opens up to what looks like a clearing down past the bend, where the trees don?t mask the sunlight. We put this print on the bedroom wall across from our bed. It symbolized to us the path out of grief that we walked together. We never did reach that clearing, though, because we walked that road slowly and stopped along the way to observe all the trees and plantings and to reminisce about all that we had encountered along the roadways in our lives up until that point, which we now walked together. That print is still on the wall, although I have it obscured by a large photo of John that sits in front of it. We probably never would have reached that clearing, though, because we never stopped grieving, even though the road was lit more clearly by the sunlight overhead. My walk along the road has changed remarkably since John died. He is no longer here, holding my hand, holding me and keeping me warm when the seasons change and the stiff Kansas winds pick up like they did last night. He isn?t here to revel in the dusting of snow we got last night, signaling his favorite season of winter that isn?t far away. There have been landslides that have rumbled down from the outcrops along the sides of the road that have blocked my path and have at times just piled at my feet. I have shouted out in anger because my best laid plans for life along this road have been washed out. We forged this road together, chose it after consideration of other options, and I, in particular, made tremendous changes in my life to come and walk this really beautiful road with him. Now, I find myself walking it alone, without the partner who supported me in making a big transition in my life. Fortunately, I?ve had some really wonderful friends who have helped me try to find some footing. They were there when I decided to take a break from this road and travel to some distant lands to regroup and gain some strength so that I could return and try to figure out how to keep walking my path without John. I?ve spent a few months back on my path now, but the reality is that my path has become darker still, and although I return to town for provisions on a regular basis, I tend to keep my head up and tell people that I?m pulling this off fairly well?. but I?m not. I hurt like hell. I cry for John in my little house, where I can barely stand to walk into his basement shop where he spent time working when he was home. Yes, I get angry sometimes, but sadness has really overtaken me, even though I tend to express it alone. I want to hope for a happy future, and to some day find another great love in my life, but for right now, I can only think of John and the great love that we shared and how much that loss has broken me. I reach out to friends and I want to share in their stories and their joys as well, because they give me hope and moments of happiness where I can escape the sadness that is sometimes incredibly oppressive. I?m not good at reaching out for what it is that I need. I?ve always been the strong one and that is the skin I am most comfortable living within. Last night a good friend helped me with a bit of a breakthrough in expressing my true state of mind. I hurt. I?m broken. I need support. I need friendship. I need you guys in ways I never have. I?m going to get a short break from this road soon, as I travel back to my old stomping grounds. I need to refuel. I?m tired. Sigh. I have to say that four months later, I am not in as bad a place as I was in on November 11, 2014. Am I in a good place? Well, not really good, but better, and the weight isn't as heavy as it was. What has changed? For one, acknowledging my pain has helped. I've found alternatives to coping with my anxiety. Obtaining my precious dog Rosie has made a considerable improvement in my anxiety. She is with me 24/7 and I know I can depend on her. I've started full time grad school and I am a graduate assistant and I am busier and there is less time to dwell on unproductive thoughts. I'm half-way through the semester and I won't pull off all "A's" this time, but that's okay. This summer, I'm planning another road trip, this time with my 14 year old niece and we are going west this time. I don't know as many people out that way, but I'm going anyway! I'm able to look ahead some. I have to believe I can be actually happy again. I'm a realist, but some optimism might be peeking out. I hope so. Maureen

Mike, You know yourself better than anyone and will do what is right for you. You know me, too, and you know some of my attitudes about life. I hate being miserable and unhappy and some day, I hope to find a new special someone because I'm not meant to be alone. Perhaps some of us are...but I'm willing to take that chance again. I know you've been burned by family and friends, more so than I have. I might feel the same way if I wore your size 10's. Glad you are here. Maureen

Jason, It is so hard to lose your love and your future and to have people place blame for her death on you, too. I'm in school, too, started a new semester 11 days after my husband died, and I find the further out I get from his death, the harder it is sometimes to focus on my school work. You should have Grace at your side, the opportunity to marry her and have children with her and have a future with her. The world is hearing your voice. Sadly, at the same time, it does nothing to bring Grace back. We are listening. Maureen

mixelated...welcome to the club that nobody wants to join. Sadly, the price of admission is terribly high. But this is an amazing group of people and I encourage you to connect with those who are in your time frame (they understand and remember best what it is like to be where you are) and anyone else, no matter how far out, if something about them resonates with you. Come here, read, vent, talk about whatever it is that moves you. It is still early for you and the going isn't easy. This group of people has been a backbone of support for me through the loss of not one, but two husbands, and I'm not sure what I would have done without them.'' Maureen

[quote author=tkent74 link=topic=49.msg2366#msg2366 date=1426565203 Still, I have no clue what a bago is? Hi, Kent. Welcome to the club that nobody wants to belong to. A bago, short for widowbago, is simply a social gathering of widows/widowers. The term was coined many years ago after people on the original YWBB decided they wanted to meet with people that they were communicating with on that board. So...people plan get-togethers that might be a dinner at a restaurant to weekends to extended weekends where people get together and enjoy each others company. There are some areas in the US, in particular where groups meet fairly regularly. Some bagos have become yearly events and people travel from across the country to attend. These events are usually advertised in the Widowbago section of the board and are open to any widows/widowers. I have been to many such gatherings as well as one-on-one meetings with people here from the board. I've also met with board widows in Australia and Canada, but my "home" group is based in the Connecticut area where I used to live and where I attended my first bago less than 2 months after losing my first husband. I hope this answered your question. Maureen

Wish I could just give you a hug, TFO. And I'd love to bago with you. You bring your dog, I'll bring mine. Sound good? I just can't go there right NOW! Shucks. Take a westerly route on your way back north...to Kansas. I'll see you here. Maureen

Your smile says everything! Maureen

John died 5 days before his 57th birthday. Sometimes I'm glad I get two sucky days close together. If it is going to suck...let it suck all at the same time, right? Hugs... Maureen

Shelby, I know you know my story and my thoughts on the questions you pose. I decided to add a comment here about goodbyes. I truly wonder how many of us really say "goodbye". I know I didn't. Barry and I had had many, many conversations over the 18 years we were together about life and death. He had already long outlived his prognosis when I met him. When I decided I would follow my heart and marry him, we had already had talks about life and death. I was fortunate to get a long talk with him the night before he got sick the last time, when he asked me if it would be better for me if he died a quick death or a slow death. Talk about a tough question! (I told him what was more important was that it was a good death for him.) He woke up sick the next day and died a week later. We also had a talk three days before he died after he awoke from a coma that nobody expected him to wake up from. That talk was about how he might die, but that we hoped he would pull through. Even to the end, we never said good bye. What we did say was "I love you." From my conversations with other wids who were with their spouse at the end, these words were also the last words spoken. Maureen

I am another one glad to see you back. You are one of the veterans I looked to for wisdom in my early days at YWBB. You and your contemporaries had so much to offer this board and I am so glad to see others who have been quiet for awhile back here with sound support for those on the trail a shorter period of time. Thank you...for being here. Maureen

Dear Barry, Hi, my love. I have been wanting to talk to you so badly. I just can?t seem to find you here in Kansas. You are not here. I left you back in Connecticut, buried in a nice little spot in the cemetery close to the road so your parents could visit you more easily. The last time I was there, snow had been falling by the foot and the plow guy had managed to pile about 8 feet of snow on your grave. So much for the spot I picked for us on the corner near the road. I have so much to tell you. When I was last on the east coast, I told you and our families about my new life and my plans to marry a beautiful man who is known in the world of the widowed as Polarbear. Well, my love, our time has arrived and Saturday, we will go to Hawaii and one week from today, we will profess our love to each other in nature?s sanctuary. We chose a beautiful setting of warmth and fresh air and the ocean and volcanoes and simplicity. The island is a great symbol of the things we have come to appreciate together on this journey which started with the loss of two beautiful people. I have learned so much in the time since my heart was broken by death. I have known deep sorrow?.sadness that stripped me down to my core in anguish. I have known emptiness and hollowness and despair so deep that I have contemplated leaving this life behind. Somehow, in allowing myself to be broken, I have also found the desire to live on in fullness again. You and I had a most special bond, my love, unlike any I have ever seen. We always knew we would some day be torn apart. We clung to each other as if doing so would perhaps keep the monster of death from coming between us. I tried, my love, as best I could, to keep you here with me. In the end, the monster of death was stronger than you and me together. I am left here on this earth without you. I feel sadness and sometimes even anguish over having you ripped from me. But some part of you lives on in my soul. I feel you urging me to live. I thank you for that. Love has found me again, Barry. John is a beautiful man, broken in ways similar to my brokenness. He loves me in profound ways. He holds me and comforts me in the times when I mourn for you. He brings me joy and tenderness and fun and adventure and security and so many other things. I love him, Barry, and I will marry him and live on in love, remembering you and our love as well. Thank you, my love, for all that you have given to me. I love you??.and I always will. Maureen My happy ending lasted less than 3 more years. :'(

Hi, Jen, I know you are moving into the last few weeks before the first anniversary of Jim's death. These weeks are incredibly hard. Things kick up. It's a tough wave. I can't say your pain will lessen...just that mine did with my first husband and I wish it would hurry and ease up faster since the death of my second husband. There are times when I have more optimism than at other times. I know for sure that I hate being miserable, and for that reason alone I feel as though I've got to keep looking forward and walking toward the future. It has to be better than staying immersed in all of this pain...I tell that to myself. And so each day, I keep walking. Sometimes I stumble and sometimes I break down and cry and sometimes I have panic and anxiety, but still, I keep my eyes facing forward. Doing this one day at a time has gotten me through over a year of school, medical issues, holidays and vacations and days when throwing in the towel sounded a whole lot easier than living. I hate what feels like a snail's pace sometimes, but I find I don't have much choice. It isn't happening any faster because I will it to happen. I know you've got some great supporters out there and you have a bago to look forward to...so keep those wid friends close to you and keep talking and soon you will be getting big hugs and a bit of an adventure that will reassure you that there are other people here for you, even when you feel totally alone. Hugs, Maureen

TMI, my friend? Maybe you should qualify this statement. Maureen

Alexswife, I got to have 2 anniversaries with my polarbear, but in 11 days, I will observe the second one he has missed. It must be even harder not to have been able to celebrate at all. Hugs to you! Maureen

Jason...I would just like to say you are a beautiful man. Your heart is huge and full of love and sorrow, too. I find it so difficult to understand how people could be so cruel with their words. Your loss of Grace is so tragic. It hurts to know you have learned one of life's hard lessons at such a young age. You should have been able to live in bliss and innocence until you were much older. Thank you for sharing your depth with us. Hugs, Maureen

Thank you, anniegirl and lcoxwell. I've been reading a lot...well, everything, but I don't always have what it takes in the moment to respond to people, even in simple ways. It makes a difference when people respond...even just in acknowledgement that they read what you had to say. This whole board change has set me backwards and into places that had healed fairly well. I feel like some of my scars have broken open. Reliving this story...one I've told many times, but not recently, was one of those things I didn't intend to do at this point. I have enough on my plate and some things have resurfaced and I had no say in that how it happened. I really wish I hadn't been forced into thinking about things I'd already worked through. There are things that few people here really ever knew about, too. I had a separate screen name that I had used only a short time when issues surfaced after my first husband's death. I've also relived my second husband's grief in reading some of his posts and then recalling some of our early conversations. I didn't need this. I need to focus back on my school work and get some research and another project done, but instead of just skimming the old board quickly, I find myself back to reading everything and feeling old pain all over again. Sigh. Maureen

Rabidbadgerwid and Livewire. I hope Livewire doesn't resurface. Maureen

I would contact the manufacturer of the products that you need. Let them know your situation. Ask about alternative products as well. There may be relatively few manufacturers that make pediatric products like you need. Ask for them to donate supplies. Ask if they know of charitable organizations that pay for these kinds of products. There may be something like a Shriners' organization. Don't take "no" for an answer when talking to whoever approves payment for your chicklets' medical care. I know a man who once went to the offices of his insurance company and asked to talk to a supervisor. He needed approval on a complicated wheelchair that cost about $30,000. He was told the person he needed wasn't there that day. He told them he wasn't going anywhere until someone resolved his issue. He sat in a foyer area of the building all day long, and every hour, he went up to the receptionist (who got more and more uncomfortable with him sitting there) and he asked her to call for someone to speak to. At the end of the day, he was still sitting there, but apparently, the whole building (oh, probably 100 employees) knew that there was a persistent man waiting to have his issues addressed. Finally, as the day closed, someone came out and told him his wheelchair had been approved. He made them put it in writing before he would leave. I'm not saying you can do this, but you might need to impress upon someone that your daughter NEEDS these supplies and if it was their child, how would THEY handle it? Sometimes, common sense prevails. Best wishes on having success. Maureen