A bad day, a very bad day

The past 24 hours have not been good. Started about this time yesterday as my sister was rubbing my back with Ben-Gay and I was trying to talk to her without crying. It is never a good idea for me to hold back the tears. I know when they are inevitable and should just let them flow freely. But they haven’t stopped and I am tired of crying.

I didn’t even go to church this morning, which isn’t like me. I don’t even want to write how many hours of TV I’ve been watching just to numb my mind. Shows like “Lock Up” and “Untold Stories of the ER”. I don’t know why, but I am fascinated with shows like that.

I thought it might be therapeutic to write what everything going on in the past couple of days that contributed to my meltdown. (not necessarily in order of importance)

• I can’t do my own hair anymore. Megan was out of town this weekend. Cliff tries, he really does, but it’s not like Megan does it. It affects how I feel about myself. Adding bad hair to an already crappy situation is not good.

• I am gathering my thoughts for an ALS Conference on Wednesday. I am sharing from a patient’s prospective – my journey, expected and unexpected bumps and ways of coping. And boy oh boy, has this journey changed.

• I have an appointment with my primary care doctor tomorrow for my back. I am so, so, so weary of this back discomfort. That is definitely on my list for Wednesday as an unforeseen bump.
  

• Joel was here yesterday afternoon for a few hours. That makes me happy/sad. But mostly happy. I haven’t seen him August. After we hugged, I asked “Can you come into the bathroom and try to fix my hair?”

• Went to Blindside yesterday – great movie! It was the second time that I’ve been to the movie theater in the power chair. The first time it was on a Monday afternoon with very few people. It was different this time, especially as we were leaving. I felt unusually self-conscious.

• It is getting harder to talk and that makes me sad. No, what makes me sad isn’t that it’s harder to talk, but people don’t always understand me the first time.

• Just found out that an ALS friend I met in Washington, DC went into a nursing home last week. He is 51 years old.

• Scanning in old pictures – bittersweet.
  

• Reading through old journals. I think those need to be put up somewhere out of my reach.

• My brother is coming for a visit. He lives in PA. That makes me happy/sad.

• I saw someone yesterday that I haven’t seen in almost four years. I wasn’t even using a cane at that time. It seemed to me that this person was avoiding a conversation with me. I wanted to shout, “I know you’re uncomfortable, but I’m still me.” If I felt better about my hair ☺ I would’ve zipped over to her.

• I got a text from a friend on thanksgiving. We hadn’t communicated for a few months. In response to her asking how I was doing, my answer was Ready to go HOME.
  

I knew

I knew this was going to be God ‘s path for me. In a way that I’ve never experienced before. For the past week I’ve been going through old journals. I wondered if I wrote it as confidently as I felt it. It’s been interesting to read my entries during that time period. In some ways not any different than now with the emotional and spiritual roller coaster.

The following entries were during the diagnosis period –which began at the beginning of March and ended June 6th with the definite diagnosis after months of tests ruled out everything else.

I knew, I really did know. It was almost as if God whispered it to me.

March 29, 2004
God truly knows what I’ve been thinking regarding the worst possibility and that is peace. It’s almost as if I can see how that’s been part of his plan.

March 31, 2004
I don’t even want to put in writing all of the crazy stuff I’ve been thinking. But, I will write one thing – when I think that the deep down inside worst case scenario stuff, I am thinking, well I will have time to make this right or talk to this person or really share my faith, but it should not take the fear of an illness to make me want to do those things.

April 2, 2004
It’s strange; it being something bad makes so much sense when I think of the “big scheme.” Is that faith or is that stupidity?


April 5, 2004
I want to be used by God in this. I want my attitude to be “however this can be used to glorify you God, let it be.” If it’s through healing, wrong diagnosis, missed blood tests, or letting His spirit shine in a dying body – let me have total peace and confidence and trust in my Heavenly Father. I don’t want to be afraid or depressed and I know that peace can come from God. I want to trust in Him for everything knowing that “all things work together for good for those who love God.”

April 9, 2004
I am striving to pray for peace and acceptance for God's will. I know He can heal, I know He can make it something that is treatable, I know He can show the doctor a blood test that the other doctor missed, but I also know that His plan may not be any of those. I pray, which is very scary, that God will use me in this to glorify Him and that I will be at peace with what He wants for me.


Wednesday, April 28, 2004 7:05 am

Wow, I hope I can somehow can all this down in an understandable kind of way.
Diagnosis: Probable ALS. On experimental drugs, scheduled for 2nd opinion at Duke, but not until July.
I am doing so fine it’s scary. I know people probably think I am in shock, I don’t think so. I truly believe it is God’s arms wrapped around me and carrying me – I do. I am at peace, I am thankful to finally know, even thought I have “known” for a month. I have known that this was God’s plan for me, and I am ok with that. I KNOW God is going to use this so I can glorify Him. I am so not afraid of dying. It is the strangest thing – now that I know I am dying I have never, ever felt more alive. Is that normal? Does everyone who is diagnosed with a terminal illness feel this at some point?

May 1, 2004.

I HATE, HATE, HATE this! I am sad, I am mad, I am very, very, very scared. I find myself thinking such extremes like: Wow, I get to go be with God to I cannot even fathom being gone forever and ever and ever. I go from thinking that I just want to savor and enjoy every single moment to wanting to crawl into my bed and cover my head and say NO,NO.NO!!!!!!!

May 4, 2004
I found myself thinking today, probably for the first time – ok, what does “probable” really mean? Is there a chance that we go to Duke and find out something totally different? What if this has been a test and………..I’ve passed, because I’ve said OK God whatever you want to do with me, do it. Is that crazy to be thinking those kind of thoughts? Do I/have I ever trusted God totally to heal me? Have I ever trusted God totally in any area of my life?


May 11, 2004
I hate this with a passion. I am angry, sad, hopeless and depressed. I want to say, OK God, I’ve got it, lesson learned – please let me go back to my old life. I will never, ever take anything or anyone for granted again. I will share my faith and stand up for you. Please God let me have my life back. But even as I am writing this, I am not confident of it happening. I have “known” this is my path, I am just having a really hard time accepting it.


May 12, 2004

I am not sure what I’ve been saying is true, that it’s okay to say I hate this, this sucks, I don’t want this – but God I still love you and will be obedient. I woke up this morning and talked to God with a different attitude asking Him to fill me up with His power and guidance and love and peace and everything.

May 31, 2004
I don’t want this disease, I don’t, I don’t, I don’t. But I will accept whatever God has in store for me and I KNOW that HE will give me the strength to endure. But I also know that HE can heal and I don’t know if I’ve ever asked Him for that until this morning.

June 13, 2004

Wow, it’s been a while. I have been so, so, so very sad. I got the diagnosis on Tuesday, will write more about the facts later. Just wanted to write what I was feeling right now.

I think it’s interesting that people think I am strong, I am not. I am so weak and so human and so imperfect. People have even said things that if anyone can handle this it’s me. I don’t like that, that doesn’t make me feel good.

I think one of the scary parts is that the grief seems never-ending. It’s not like I can grieve through this portion and move on and leave the grief behind. It’s going to be a constant process of loss and that’s the part that makes me feel hopeless.

Today-Friday, November 27, 2009
Wow. What a journey. It is amazing to me that some things are the same –one minute I am trusting and hoping and the next I am distraught.

I was listening to a podcast today by Francis Chan entitled “The Holy Spirit’s Power and our Effort”. He was teaching from 2 Peter 1:5-11. These verses jumped out to me and especially the word “steadfast”.
5 For this very reason, make every effort to supplement your faith with virtue, and virtue with knowledge, 6 and knowledge with self-control, and self-control with steadfastness, and steadfastness with godliness.....

I was so intrigued that I looked up the original Greek
in the NT the characteristic of a man who is not swerved from his deliberate purpose and his loyalty to faith and piety by even the greatest trials and sufferings.

I don’t think “before” I had any idea of the meaning of the word perseverance or steadfastness. What I love about the word is that there is nothing that implies that we have to like what we're going through. Both Cliff and I have shared that is one of our greatest lessons in all of this is that we can be devoted to Jesus and how He is changing us and using this, but not like it one bit. And I don't.

Loop Throwers

I’ve repeatedly said that the things I did not see coming with ALS have thrown me for a loop. The expected things seem easier to deal with. As difficult as my speech being affected has been, the worst part was leading up to it.

Two major unexpected things happened this past year – the depression and back issues. And yes, I probably should have seen them coming, but I did not.
This is part of an email that I wrote to my doctor this morning…


It is with great frustration and dismay that I write. I am at the point that my back discomfort has grown from a nagging irritation to pain. I am currently getting out -patient physical therapy. I cried for 15 minutes to the poor PT today because this is really getting to me. I have never, ever been comfortable in this chair. Never. And it hasn’t been for a lack of people trying to help me

Whether the reason is poor posture in the chair or not sitting correctly at the computer or not tilting enough (all of which I 've remedied already or in the process of), the fact remains that it it’s been several months that I’ve been dealing with this.

I am hesitant about medication because I have a fear that 6 months down the road my family will be staging an intervention:)

I’ve been crying a lot in the past couple of days. because of the frustration of having to deal with this.

I find myself thinking. I is this my “thorn in the flesh? Its is interesting to me that I have never thought of ALS that way but I would think of my back in this way. I was talking with some friends today about the battle with the enemy how it really does seem that our greatest attacks seem to occur after times of the most intimacy with Him.

This is pretty disjointed. I hope it makes sense. I did the entire entry with my on-screen keyboard and dwelling mouse. Two hours at 11 words per minute, but I did it!

Oh……… when I told Joel about my fear of ending up on an episode of Intervention, he said understood, BUT it would make great television.

A Time and a Season for Everything

Including friendships?

Ecclesiastes 3
1 There is a time for everything,
and a season for every activity under heaven:

I’ve been thinking about this for a while. Everything is different in my life now.
My life changed from before to after with my diagnosis in June of 2004. And it almost seems as if there’s been an after part 2 with all the changes that this year brought. One of the changes is friendship.

In the past, I haven’t been a good long-term friend.

I can think of people that have been in my life for “a time”--a period of intensity-- which is filled with deepness and a special connection. And then it changes. Weeks, then months go by and I realize that we haven’t communicated. Did God only place us in each others' lives for a season? Or is it me?

About three years ago a “Finding your spiritual gifts” class was offered at church. It prompted a discussion between Cliff and myself about each others' spiritual gifts. I asked Cliff how he would describe my gifts to others. He answered, “Her gift is the ability to connect with people. She can make a stranger feel comfortable. Instant best friends.” And then he added… “ But She’s only good for about three months. Because she sucks at long term friendships”.

Ouch. But the truth does hurt. And that was my truth at that time. In the past year, I believe I’ve grown. Upon sharing that with my family, Cliff said he thinks I’ve gotten better and Megan said, “Really Mom…how long is your long term now?” Good question honey.

I have wonderful friends. And hope that I am a good friend to them. The most intimate relationships I have at this moment are the ones which we've connected because of painful experiences like depression, illness and death. There is an understanding there and I think these friendships exemplify “rejoicing with those who rejoice and weeping with those who weep”.

I don’t know if some people are just in each others' lives for a season. I think, hope, and pray that I am short-term, but I just don't know.

I do know this...my life is incredibly enriched by the friends God has given me.

Role Reversal

Sometimes the frustration gets the best of me. And that’s when Cliff’s sense of humor comes in handy. And if he isn’t in that kind of mood, then Megan acting like my mother instead of daughter seems to do the trick.


One of the things that I need help with is getting into my pajamas after I’ve taken a bath. I still have a lot of upper body strength and getting the pants on involves my holding onto the side of the wheelchair and boosting myself up. By the end of the day, I am tired and it’s hard to keep myself up for more than a few seconds. Combined with not getting all the way dry, it can be extremely frustrating. Megan and Cliff alternate helping me.

A couple of weeks ago, it was Cliff’s turn. It was the Sunday evening after his camping weekend with Joel, so he was extremely exhausted. As he attempted to get my pajama bottoms on, it wasn’t going well. At all. After we both struggled without any success and my deciding that Cliff was too frustrated to do it (remember my perception is my reality) I called out “Megan!!!!” (probably more like MEGAN!!!!!!) She opened the door and I said “Please get these pajamas on me.” And started crying.

Cliff left the room and she helped me. And then, in a voice like she was talking to a three year old, she looked at me and said….. “Are those tears really necessary?”

Guess she forgot who she was talking to.

My Two Guys

As I mentioned in an earlier post, Cliff went hiking and camping in the mountains with Joel last weekend. Cliff and I have been married for 14 years. Megan was almost ten when we got married and Joel just turned eight. He loves both of them very much and is a wonderful father to them.

Cliff is a good man, a Godly man. He's taught me over and over about selfless love. He came up with the idea of writing about the trip for my blog. I loved it. And keep in mind - Cliff is NOT an outdoors person. At all.



The day started out like any other involving a long uphill seven hour drive, early. Combined with frozen sandwiches made the night before and lots of caffeine I hit the road. I drove west for long periods of time listening to old time radio and wondering how I would survive the weekend without the plane crash? The back story to that joke is I usually say I would only go camping when my plane goes down in the Andes. Well eventually I got to the western spot I so craved and met a young grizzly Adams in the parking lot of a local motel in Bryson City. Well the young Mr. Adams turned out to be my son Joel.

We the wind up in the woods. My first observation as a trained observer is to point out my pack seems larger than his. Being old and out of shape I found this funny but Joel assures me they are about the same weight. I then flash back that vacationing at the alligator ranch in Florida is about the same as going to the handbag counter at Macy's but I digress. After a short hike we stopped at a beautiful water fall and wind up at our campsite. We set up camp and looked for firewood and I realized I was actually having fun so naturally I got a little nervous. The first night went well and we both heard something walking close to our campsite but Joel did not panic so I was obligated to do the same. The funniest thing from the first night was the mummy bag I was in somehow got corkscrewed around me so I had to put my left arm out of the small face opening in the bag and hunt around to my right for the zipper. I was flailing around like a one armed octopus trying to start a car to get back to the beach but eventually was successful.

Then next morning we broke camp cleaned up and started down the hill to the parking lot. Downhill is easier and quicker so we made good time. A good breakfast in town got us started on the next leg of my great outdoor adventure. We made our way to the Cheoah River because water was being released and would make for great kayaking. Joel planned on running the river and I found a good spot to get some video. He had done this before so all was going well. Of course going well means bad so he finds out the friends he was going to meet were not running that day. He then looks for folks to follow who have run before and we are set! After a while I see Joel floating down the river and watch him pull off to the side waiting on his traveling partner. I was not prepared for what I see next. A blue kayak comes floating upside down near where Joel had pulled off. I have not described what was ahead of these kayakers. Just ahead is a waterfall with three parts. One was a conventional looking waterfall on the left, the middle had a series of rocks that formed irregular steps that ended with rocks at the bottom and the right was a sluice gate looking thing that rafts full of people would use. So this kayak with no human in it is headed straight for the waterfall. Then we see the kayaker who hits a small rock and flies into the air. The onlookers are shocked and this fellow can't decide if he should follow his kayak or head to the side. Naturally he heads for the waterfall and goes over head first. So I keep taping wondering what just happened. Joel then runs the rocky part and I head to the pick-up point.

The end of the run is a large parking lot that is controlled chaos. I wander down to the water to watch for Joel. I am sitting at the end of this long concrete run when I hear the dreaded question... could you take our picture? There were four women at the other end of the concrete and one is coming my way. She then asks again and shows me her camera. This makes things simpler so I say sure. They tell me all about why they are there and tell me they have been drinking. As I get closer to the group the ring leader tells the others we are doing a picture and everyone is going to show me their boobs. More panic sets in and I stop the picture. She was kidding and a picture is made without too much trouble.

Joel shows up and gives me the background on kayak groupies, there are more than I would have thought and we load up to go. Seems the barrel less barrel rider had dislocated his shoulder but was OK.

The rest of the day was a visit to the Joyce Kilmer tree memorial and another night of camping. The trees were amazing and huge but the real fun was the camping. It was more of a gentrified campsite and fire pit so we set up on a cleared raised platform and cooked smoked sausage on a stick! That turned out to be fun as well and Joel and I talked for quite a long time about everything and nothing. I put up my tent and determined not to play octopi again and eventually turned in. The tent I stayed in the two nights was a small two man thing that I had to myself. I started out on my back and things were turned topsy turvy from there. I realized the world was upside down when I woke up and still lying on my back I saw I was staring out of the door flap. Let that image settle in. Of course I thought I was dreaming and woke up again around 5:17 to see the world was still not right or rather right sided. I knew I was not dreaming and bolted upright looking for Joel. I was looking to see I had not crushed him because somehow I had rolled over in my sleep and flipped my tent. The floor became the wall and the floor used to be the wall. I unzipped quickly. I don't remember if I used the face hole and made sure Joel was safe. He was sleeping on the ground outside the tent. Thankfully I had rolled away from him. I fixed the problem and went to sleep again. We both had a good laugh that morning. I hit the road shortly after that ready for my long ride home. There were a few more stories about meth trailers and the Gov. of New Jersey being called fat on the Don Imus show but those are stories for another blog.

I had a tremendous time with Joel and enjoyed seeing him in his element. I am extremely proud of him and plan on trying another camping trip early next year. As with any good adventure I needed a moral and the best I can come up with is I no longer have to wait for a plane to go down to camp. Good news for all the passengers on the plane I will be on in the future.

Safe

This picture was taken in April, 1998. It is Joel and my nephew Josh. Zipping along with a box taped to a skateboard. My sister, Jeri (Josh's Mom), was visiting from her home in VA. I love this picture. Look at Joel and Josh. No indication of the tragedy that had occurred the week before when Jeri’s husband died very unexpectedly from an undiagnosed heart condition.


Chris’ death brought a shocking realization of this verse…….
You are a mist that appears for a little while and then vanishes.

After the funeral, I remember returning to our home in North Carolina and only then did the reality sink in. I wanted to flee back to Virginia, to Jeri, to the bubble, where life seemed to be on “pause”.

It was heartbreaking to witness her grief. As much as I wanted to take it away, I knew that was impossible. So I joined her in mourning.

Just as I could not take away her grief, she can’t take away this illness. I wanted to put her life on “pause” (or better yet, rewind), but I knew that she had to move forward. And I would be there to help her – as she is with me. And as I joined in her suffering, she joins me now.

Look at the picture again. Closely. Envision my face instead of Josh’s and Jeri as the one pushing. Not running along beside me, but steering me on this journey. And just like Josh, I feel safe in my box – even in the midst of sorrow.

Mostly Good Spirits

That was the answer that Cliff gave to someone today who asked about me. Thanks honey. It’s been a couple of years since Cliff spoke to him and he was asking about us.

This past weekend I asked Megan and Jeri what adjectives they would use to describe me. I didn’t tell them my reason for asking. But wondered if their descriptions would include words like sad. Cliff was out of town so he missed my little survey ☺

I was curious since my blog intention was never to be a daily “this is what I’m doing” but an intentional “this is what I’m learning from God”. But have I communicated that there are many happy times?

This past weekend was unseasonably warm in North Carolina – bright blue skies and 75 degrees. On Saturday I spent time with a friend that I haven’t seen since March. She drove to a place called River Park North. I got as close to the water as I could with the power chair and we visited for a couple of hours. She reads my blog and I shared with her the things I was thinking about. And it was during that conversation that I realized that I write less frequently during the happy moments. I am certainly more reflective during the solemn times. And writing becomes both healing and revealing.

So I wanted to share something different.

It was just Megan and I this weekend because Cliff was hiking and camping with Joel. For those of you who don’t know my husband he is not an outdoors guy. But would do anything to hang out and spend time with Joel. (And yes Amanda, he does have funny stories – ask him about the drunk girls yelling TAKE OUR PICTURE!!!). It was also the first time in a long long time that Cliff’s been away. Let’s say that it was a much-needed break for him.

Megan ended up sleeping in my bed in case I needed anything. I woke up early on Sunday morning and just lay there for a while. I heard Megan wake up and she reached over and took my hand and just held on to it. Thank you sweet girl.

My cousin Tom was in town from PA. I haven’t seen him since April 2008. It definitely was NOT an “I’m going to see her before she dies trip”. (I freak out sometimes about people visiting) My mom and his mom had eight kids between them in the span of seven years. My aunt became a widow about the same time my parents divorced. We were more like brother and sisters than cousins. Tom came to visit me and Jeri and our families. It was so much fun to reminisce together – especially about Thanksgiving at my grandmother’s house. As the oldest (and bossiest) grandchild I was always in charge of the talent show. We all laughed our heads off telling stories this weekend.

Even had a picnic in the park on Sunday afternoon.





Please know that I have peace, joy and contentment – most of the time. I am happy and laugh - often.

And I am thankful – always.

Expect Suffering

The more I read in God’s Word, the more I understand that suffering and troubles are not something that may happen, but WILL happen. Verses like these are all over the New Testament.

• Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.

• In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.

• Consider it pure joy, my brothers, whenever you face trials of many kinds

Sometimes I've made the same in the statement that I have felt ill-equipped for this illness and its impact. Prior to ALS, there have certainly been struggles and extremely hard times but paled in comparison to this.

If suffering as Christians is addressed over and over in the Bible, why are we often surprised when it happens? What if suffering for our faith was taught as part of counting the cost?

I've wondered a lot about teaching on suffering. It almost seems like we have it backwards. I am repulsed by the health, wealth and prosperity gospel, but wonder if we subconsciously give people the impression that following Jesus means that your life will be trouble-free. I don't know anyone who believes that but I really do wonder if that is the communicated message……follow Jesus and life will be easy and comfortable.

I hate this. What this disease is doing to my body and my independence. I hate the impact on my family. Hate it.

But I love Jesus. LOVE Him. LOVE, LOVE, LOVE Him.

Phil 3:8Yea doubtless, and I count all things but loss for the excellency of the knowledge of Christ Jesus my Lord: for whom I have suffered the loss of all things, and do count them but dung, that I may win Christ.

I am not a bible scholar. Don’t usually read the KJV. But I recently heard in a sermon that the Greek word for dung is the only time it’s used in the Bible. (any refuse, as the excrement of animals, offscourings, rubbish, dregs. things worthless and detestable)

This is the verse that I say over and over. It brings it all into prospective.

Compared to knowing Jesus Christ my Lord, everything else is crap.

Going Home

I have a friend that is battling cancer. We’ve had conversations about “going home.” I believe there is a depth of understanding that comes with sadness and suffering. A compassion for others that I didn’t have “before.” And certainly a deeper longing for heaven that I didn’t have "before".

Every Sunday morning, following Tim’s lesson, he gives the congregation an opportunity to respond – for prayer, decisions for Jesus or to share. You can meet privately with someone or if so led, share in front of everyone. You can imagine how powerful it is when people share a burden in front of everyone and we cry and pray together. There have been occasions when the entire church surrounds the person and everyone is sobbing.

I told my friend that we needed to go up during that time and ask everyone to gather around and pray for us to go to heaven and be with Jesus. I wonder what would happen?

Cliff says I am just “big talk”. Maybe I am. But maybe, just maybe someday I will have the courage to do it.